A. Acceptance of these Terms
The Reg4All.org website ("this website" or "Site") is owned and operated by
Genetic Alliance, Inc., a 501(c)(6) non-profit based in Washington, D.C. ("Genetic
Alliance" or "we" or "us"), working in conjunction with Private Access, Inc., a
vendor and development partner.
you do not agree to these Terms, you are not permitted to use this website.
Reg4ALL utilizes PrivacyLayer® from Private Access to assist you to control who can access or use any information you enter through this Site. Accordingly, if you chose to use the Reg4ALL service, you will need a Private Access account (or you must create a Private Access account if you do not already have one). As an individual user, there is no charge to you for a Private Access account. However, in conjunction with creating a new Private Access account, you will be required to agree to the terms of an Individual End-User License Agreement (“EULA”) for PrivacyLayer™. From your Private Access account, you can control your privacy preferences for all information that you enter into this service as well as confidential or sensitive information held by other entities that also use PrivacyLayer® from Private Access to ensure that they adhere to their clients’ privacy wishes with respect to information held by that entity. Other than your Private Access account information and privacy settings, all information that you enter through Reg4ALL is stored in the Reg4ALL database, which is also used by TrialsFinder®, a related service owned by Genetic Alliance. TrialsFinder® has its own website at www.TrialsFinder.org, and uses PrivacyLayer. Thus, you can use your Private Access account to manage your privacy wishes for both sites from your Private Access account, which is accessible through either website.
The EULA will be customized to the service to be provided, and its terms will supplement
reference into these Terms.
B. Authorized Use of the Site, Restrictions, and Disclosures
1. You must meet the minimum age requirements of a referring site or be at least
18 years of age, legally competent, and a U.S. resident to use this website.
2. You acknowledge and agree that we are not engaged in the practice of privacy
law, either through the website or associated services, and that the website is
not a substitute for professional legal advice.
IF YOU HAVE ANY QUESTIONS ABOUT YOUR LEGAL RIGHTS, OR FEEL THAT YOUR PRIVACY HAS
BEEN VIOLATED OR NEED LEGAL HELP, YOU SHOULD CONSULT WITH A LAWYER. WE HAVE NO RESPONSIBILITY
TO PROVIDE LEGAL ADVICE OR TO TAKE ANY LEGAL ACTION IN RESPONSE TO INFORMATION YOU
PROVIDE ON THE WEBSITE.
3. You also acknowledge and agree that we are not engaged in the practice of medicine,
either through this website or any associated services, and that the website is
not a substitute for professional medical advice.
Any information and advice on the Site is given on a generalized, generic basis,
and is not specific to any individual patient's condition. Use of this site does
not create a care provider-patient relationship. On-line health services and health
information cannot replace a health professional-patient relationship. YOU SHOULD
ALWAYS CONSULT WITH A PROFESSIONAL FOR DIAGNOSIS AND TREATMENT OF ANY SPECIFIC HEALTH
PROBLEMS. YOU SHOULD NOT DISREGARD ANY ADVICE OR TREATMENT FROM YOUR HEALTH PROFESSIONAL
BASED ON YOUR INTERPRETATION OF WHAT YOU MAY READ ON THIS WEBSITE.
4. We do not assume responsibility to respond to, or take specific action in response
to, communications with us that are not in the English language.
5. We reserve the right to change the content on the website and to suspend or deny
access to the website for maintenance or modifications.
6. You agree to use this website in a manner consistent with all applicable laws,
and solely for your own personal, non-commercial purposes.
7. You agree not to post on the website any material that in the absence of express
permission, would infringe on any third party's rights, including copyright, intellectual
property, privacy and publicity rights, unless you have the appropriate legal authority
to use such material and, by your action in doing so, you grant us all necessary
rights, free of royalty and reporting requirements. You agree not to post any unlawful,
disparaging, libelous, or otherwise objectionable content as reasonably determined
8. You agree not to use the Site in any manner that could damage, disable or impair
the Site. You agree not to attempt to use the Site to gain unauthorized access to
any other website or service, accounts not registered to you, or computer systems
9. You agree not to modify, copy, distribute, transmit, display, perform, reproduce,
publish, license, sublicense, rent, lease, frame, reverse engineer, de-compile,
disassemble, modify, translate, make any attempt to discover the source code, algorithms,
or processes of the website, or create derivative works from, transfer, or otherwise
use in whole or in part information, software, products or services obtained from
this website, or any third-party web services delivered through the Site, except
for the purposes expressly provided therein, without our (and, if applicable, Related
Parties' prior written approval. If you download any information or software from
the website, you agree that you will not remove or obscure any copyright or other
notices or legends contained in any such information.
10. You agree to not use our Trademarks and Service Marks (as defined herein) for
any purpose including, but not limited to, use as metatags on other pages or sites
on the World Wide Web without our (and, if applicable, our Related Parties' express
11. You agree to indemnify, defend and hold harmless Genetic Alliance, Private Access,
and our Related Parties from all claims, liability, and costs (including attorneys's
fees) arising from your use of the website that violates these Terms.
C. WARRANTY DISCLAIMER AND LIMITATION OF LIABILITY
1. THE EULA INCLUDES SPECIFIC WARRANTY, DISCLAIMER AND LIMITATION OF LIABILITY PROVISIONS
THAT APPLY TO INDIVIDUALS WHO ACTUALLY CREATE AN ACCOUNT ON THIS SITE. HOWEVER,
IF YOU HAVE NOT YET CREATED AN ACCOUNT ON THE SITE, THE WARRANTY DISCLAIMER AND
LIMITATION OF LIABILITY TERMS IN THIS SECTION SHALL APPLY TO YOU.
2. WE PROVIDE THE WEBSITE "AS IS" AND WE DO NOT GUARANTEE THE ACCURACY OR TIMELINESS
OF INFORMATION ON THE WEBSITE. WE GIVE NO EXPRESS WARRANTIES, GUARANTEES OR CONDITIONS.
WE EXCLUDE ANY IMPLIED WARRANTIES INCLUDING THOSE OF MERCHANTABILITY, FITNESS FOR
A PARTICULAR PURPOSE, WORKMANLIKE EFFORT AND NON-INFRINGEMENT.
3. YOU CANNOT RECOVER ANY DAMAGES FROM US RELATED TO YOUR USE OF THE WEBSITE, INCLUDING
ANY DIRECT, CONSEQUENTIAL, LOST PROFITS, SPECIAL, INDIRECT, INCIDENTAL OR PUNITIVE
DAMAGES. THIS LIMITATION APPLIES EVEN IF THIS LIMITATION DOES NOT FULLY COMPENSATE
YOU FOR ANY LOSSES, OR IF WE KNEW OR SHOULD HAVE KNOWN ABOUT THE POSSIBILITY OF
4. CERTAIN JURISDICTIONS LIMIT DISCLAIMERS OF WARRANTIES OR LIMITATIONS ON LIABILITY.
IN SUCH JURISDICTIONS, YOU MAY HAVE ADDITIONAL LEGAL RIGHTS, AND THE PROVISIONS
OF THESE TERMS WILL BE IN FORCE TO THE FULLEST EXTENT PERMITTED BY LAW.
D. Intellectual Property Rights
applicable law, all right, title and interest in this website and any content contained
herein is our exclusive property or, where applicable, that of our Related Parties
and other third party users.
"Related Parties" means our licensors, licensees, vendors, suppliers, officers,
directors, owners, employees, agents, contractors, and other representatives, as
well as Private Access.
The geneticalliance.org; diseaseinfosearch.org; reg4all.org and trialsfinder.org domain addresses, the Genetic Alliance logo, Disease InfoSearch logo, Reg4ALL logo, TrialsFinder logo, and other Genetic Alliance trademarks and service marks referenced herein,
and the phrase Registries for All Diseases (collectively, the Genetic Alliance Trademarks
and Service Marks) are the exclusive property of Genetic Alliance and are used with
The privateaccess.com, privateaccess.info and recruitsource.com domain addresses, the Private Access logo and other Private Access trademarks and service marks referenced herein, including
but not limited to PrivateAccess®, SetMyPrivacy®,
PrivacyAlert®, FixMyPrivacy®, PrivacyLayer™,
Privacy Assured®, RecordsAgent™, RecruitSource™, RecordsValet®,
TrialsFinder™, the phrase "Creating an environment of trust™" and the
Privacy Assured shield (collectively, the "Trademarks and Service Marks") are trademarks and service marks of Private Access, Inc.
Other trademarks and service marks used on the Site, including Traitwise and its
related marks, are the property of third parties.
Private Access is the owner of certain patents regarding individual control over
confidential information, and various clinical trials recruitment services. Without
limitation, this includes United States Patent Numbers 7,028,049; 7,664,753; 8,131,764,
US Patent Application Number 2010-0250285, and various other pending patent applications. Portions of this Site may be covered by one or more of these patents, which are used with express permission of the patent owner.
You may use this website in accordance with these Terms. Except as expressly provided
herein or stated in writing by us and, if applicable, our licensors, no other license
is granted expressly or impliedly by estoppel or otherwise under any patent or copyright
or to use any trademark, service mark, trade secret or other intellectual property
of Genetic Alliance, Private Access or any other party.
E. Governing Law, Dispute Resolution, and Jurisdiction
All matters relating to the website or our services will be governed by the laws
of California, without regard to conflicts of laws provisions.
If you have a complaint, inquiry, or dispute (collectively, a "dispute") regarding
any aspect of the website or our services, you are encouraged to bring it to our
attention, using the procedures shown on the website for contacting us. If we are
unable to resolve the dispute ourselves, either you or we may submit the dispute
to final and binding arbitration in Orange County, California, in accordance with
the rules and procedures of the American Arbitration Association, with each party
being responsible for its own costs and fees, and the joint costs of arbitration
to be shared equally by the parties.
By agreeing to arbitration in these terms, You and We understand that both parties
are relinquishing any right to pursue claims or have disputes resolved in a court
of law, to compulsory discovery, or to the appeal of any adverse arbitration decision.
Any cause of action either party may have must be commenced within one year after
the claim or cause of action arises or is actually known or should have reasonably
been known to the disputing party. To the fullest extent permitted by applicable
law, no arbitration or claim under these Terms may be joined to any other arbitration
or claim, including any arbitration or other legal proceeding involving any other
current or former user of the website, and no class action proceedings will be permitted.
Notwithstanding any other provision in these Terms, each of the parties will be
allowed to apply for injunctive relief.
The parties agree that the jurisdiction and venue for such action seeking injunctive
relief will be the courts of the county in which our principal place of business
is located, or federal district court for the district in which our principal place
of business is located. The parties further agree that a judgment in any such action
may be enforced in other jurisdictions by suit on the judgment or ruling, or in
any other manner provided by law.
F. Procedure for Making Claims of Copyright Infringement
If you believe that your work has been copied and is accessible on this Site in
a way that constitutes copyright infringement, please write to our Copyright Agent
at our organizational headquarters at Genetic Alliance, 4301 Connecticut Avenue,
NW, Suite 404, Washington, DC 20008, or email us in care of LegalDept@PrivateAccess.com.
The requirements for what you must include in your notice are in the Digital Millennium
Copyright Act, 17 U.S.C. § 512.
G. Refund Policy
Genetic Alliance and Private Access stand by our products and services and will
honor requests for refunds due to technical issues or dissatisfaction. We ask that
you first contact Technical Support if you experience a technical issue with our
software or services. Please allow 12-24 hours for our Support Team to get back
to you. If your issue cannot be resolved, please contact Private Access Customer
Service for additional assistance.
If we are unable to resolve your concerns, or you are not satisfied with our services,
you may request a refund of any money you have paid us. Once we receive your request,
a refund will be initiated within 48 hours. Please note that Disease InfoSearch, Reg4ALL, TrialsFinder and PrivacyLayer are currently free of charge to all individual users.
Telephone (Private Access)
(888) 917-7482 Toll-free from inside the US
(949) 502-7890 Standard toll charges will apply
Telephone (Genetic Alliance)
(800) 336-GENE (4363) - Toll-free from inside the US
(202) 966-5557 - Standard toll charges will apply
Any failure or delay by either party to enforce any part of these Terms will not
constitute a waiver of that party's rights under these Terms. We have no responsibility
for any third-party websites not operated by us to which our Site may be linked.
These Terms constitute the entire agreement and supersede any prior agreement or
communications between you and us regarding the website. If you have any questions
about these Terms, please contact us at LegalDept@PrivateAccess.com.
I. Right to Change Terms
We reserve the right to change these Terms at any time. Your continued use of this
website after the effective date of the revisions constitutes your acceptance of
the new Terms.
Version: April 4, 2013
Copyright © 2013 Genetic Alliance, Inc. All rights reserved.
The services offered by Genetic Alliance that utilize the Registries for All Diseases database (Reg4All.org and TrialsFinder.org)
are provided through a collaboration between the Genetic Alliance, a non-profit
leader in health and patient advocacy, and Private Access, Inc., a pioneer in privacy-management
technology. A separation of duties between these two entities enables Reg4All and TrialsFinder
to enforce a powerful security principle called "least privilege" which says
that no single person or entity should be able to access information or to exercise
privileges beyond what is necessary to perform that person's or entity's assigned
For both Reg4All and TrialsFinder, Private Access holds and manages all
personally identifiable information and privacy preferences; and Genetic Alliance
holds and manages all de-identified information in the Reg4All database. Powerful
encryption technology is used to protect this information, and only the participant
- acting through explicit privacy preferences that he or she controls through Private
Access - can enable his or her information to be discoverable by searches of the
Reg4All database, linkable to the individual's identity, and/or used by or
shared with any person or entity.
principles of fair information practices set forth in the Department of Health and
Human Services' Nationwide Privacy and Security Framework intended to guide
the actions of all people and entities that participate in electronic sharing of
individually identifiable health information. These principles, and Reg4All's
translation of these principles into the privacy policies that guide our day-to-day
operations, are summarized below.
All information collected and stored in the Reg4ALL database is provided directly
by participants, through their responses to questions, or is health information
participants have asked their healthcare providers to send to us. The only information
Reg4All collects in the background without the user's explicit permission are
data used to manage the user session, metrics used to improve our services, and
audit data. Data collected to help us manage the user session are stored in cookies
held by the user's browser; all session information is deleted from the participant's
computer or mobile device immediately when he or she logs off, or after several
minutes of inactivity. Reg4All collects general (not user-specific) metrics
such as length of time spent on the site and the universal resource locator (URL)
of the site that referred the user to Reg4All. We aggregate these measures
with those of other participants and use these statistics to help us improve our
services. To enable us to maintain system security and to detect potential malicious
code activity and intrusions, we record all security-relevant events in an audit
With the participant's explicit permission, we also may collect information that
will help us identify, and enable participants to use social sharing and networking
options that may be of value to the participant.
or your dealings with Reg4All, please contact us in writing and sent to the
Genetic Alliance's designated address, which is 4301 Connecticut Avenue NW, Suite
404, Washington, DC 20008, Attention: Reg4All Administrator.
Version: April 4, 2013
Copyright © 2013 Genetic Alliance, Inc. All rights reserved.
Private Access, Inc. ("Private Access") was formed in
late 2006 to develop and market online technology to assist individuals like you
to more easily locate and share confidential and/or highly sensitive information
(such as health and other personal data) over the Internet, while also better protecting
the privacy of this information and making it possible for you to not have to reveal
personally identifying information (PII), including your name and contact details
unless and until you - and only you - elect to do so.
Private Access has created the following statement (this "Privacy Statement") in
order to demonstrate our ongoing commitment to your privacy. This Privacy Statement
explains the policies put in place and used by Private Access to protect your privacy
as you visit and use any of our websites, and any third-party sites or online services
displaying our Privacy Assured seal and employing our PrivacyLayer™ services,
including this website or service (this "Site").
Your use of this Site constitutes an acceptance of the
Statement. If you elect to register for and use any services offered by this Site,
you will be asked to enter into our End-User License Agreement (EULA) that will
detail further terms of service and the rights and responsibilities of the respective
parties. If you have any questions regarding this Privacy Statement or the EULA,
please contact us at info@PrivateAccess.com.
Index to topics addressed by this Privacy Statement:
Private Access believes each consumer should be able to establish and manage his
or her privacy preferences and determine for him or herself the balance that he
or she deems appropriate between the privacy and accessibility of their information.
In furtherance thereof...
What information will Private Access collect from you?
<< Back to top
Are you required to have your identity independently
Are you required to share your user name or password
for any other online services with us?
How will Private Access use your information?
What choices do you have regarding your information?
Private Access gives you meaningful choices about controlling your information -
including specifying who you let see it, how, when and for what purpose.
Your choices include:
What information will Private Access share with others?
What if you choose to use a third-party social media
sharing service or our Tell a Friend service?
Will Private Access use your information for marketing?
Not without your express permission.
There may be times when you choose to share personal information held by Private
Access or information held by a third party site or online service employing PrivacyLayer
to ensure that they only share your information according to the wishes expressed
in your Privacy Preferences. This may include times you wish to learn more about
potentially useful services, products, or participation opportunities. However,
unless you specifically consent, Private Access will not:
Private Access may post information on its website about products and services and
give you the opportunity to request more information.
In addition, if you are registered for the PrivacyLayer® service and we later
add new third-party websites and/or Web-enabled services for which your personal
information can be helpful in setting privacy options, we may email you about this.
At any time, you may opt-out of receiving such notices by following the instructions
included in each communication or by emailing us at
How does Private Access protect the security of your
Private Access is committed to protecting the security, integrity, and privacy of
your personal information. We use appropriate technologies and controls that help
prevent your information from inappropriate viewing, use, loss, or disclosure. For
example, we impose controls that limit internal access to your information; we maintain
a detailed audit log that tracks who has accessed your information, when, and for
what expressed reason; and we record when and who has accessed your account and
all changes in your Privacy Preferences. If we share your information with companies
that help us operate our business, we impose contractual requirements on them to
protect your personal information. When we collect or transmit your personal information
via the website, we use SSL (Secure Sockets Layer) encryption. We also use independent
information security experts to assess our security controls.
There is always some risk that unauthorized, wrongful, or illegal access to your
information could occur or that transmissions over the Internet could be intercepted.
If, despite our precautions, we ever experience a breach of the security of your
personal information, we will notify you in accordance with federal and state laws.
Given the sensitivity of the types of information commonly governed by Privacy Preferences,
we urge you to take extra precautions to protect the security of your Private Access
user name, password, and other security measures. In this regard, we encourage you
to take similar precautions in establishing and protecting the security of your
PrivacyLayer® user name, password, site key and related challenge questions/answers,
that you take for the user names, passwords and information that grant access to
other highly sensitive information, such as on-line access to a bank account.
How does Private Access verify that people requesting
access to your information are who they say?
To enhance security, Private Access may use independent identity verification services
to attempt to verify that anyone seeking to establish an account on our system is
who they say they are.
Once an account has been created, logging in to our system requires multi-factor
authentication (such as a User ID, a password and challenge questions) similar to
many online banking sites.
How can you access your own information?
You can view the information you have submitted into your active PrivacyLayer®
account on the website or online service where you created your account (e.g., from
or www.Reg4ALL.org), and in
the future from the PrivateAccess website. One of the advantages of a Private Access
account is that you can manage all of your Privacy Preferences from a single location.
In addition, if you ever submit personal information to us in another way, such
as by telephone, we will make commercially reasonable efforts to make that information
available to you.
Can children use the Private Access websites?
No. Private Access will not knowingly collect personal information from children
under the age of 18, and therefore will not knowingly permit users under the age
of 18 to establish or access PrivacyLayer® accounts unless: (a) jurisdictional
law expressly permits the self-reporting and use of personal information under the
age of 18; or (b) privacy settings pertain to personal information at sites available
to users under the age of 18 (such as Facebook). In both exceptions, the personal
information that we collect from users under the age of 18 will be limited to that
permitted by law or within a referring site's age restrictions. Parents or guardians
can, however, create custodial accounts for their children under the age of 18.
your user experience with our service, help us verify your identity, measure the
effectiveness of our services, and enhance our products. (Cookies are small bits
of data placed on your computer that identify your browser to our server. Web beacons,
also known as clear gif tags, are electronic images, data, or code embedded in web
pages or emails to track and measure usage and activity.) We may use web beacons
in communications with users to keep an accurate audit log that you will be able
to view from PrivacyLayer™ and, where needed, to assure proper operation of
the service (for example, to determine if a message to you was delivered and opened).
What would happen to your information if Private Access
sells its operations or goes out of business?
If Private Access, Inc. were to transfer our assets or operations in connection
with a merger, sale, bankruptcy, or other transaction, we might transfer your information
to the acquiring or merging entity. If we were to do so, we would make good faith
efforts to ensure that the acquiring entity be contractually obliged to protect
your personal information as we do. We would also make good faith efforts to notify
you in advance of the pending transaction in order to permit you an opportunity
to modify or to close your account and remove your information prior to the transaction,
should you chose to do so.
In connection with the Reg4ALL and TrialsFinder systems, Private Access has entered
into a legal agreement with Genetic Alliance, Inc., the non-profit owner of these
sites and the Reg4ALL database, pursuant to which Private Access may arrange for
a third-party insurer to write a policy that will underwrite continued operation
of the Private Access services by a trustee for a period of at least six (6) months
in the event Private Access is unable or unwilling, for any reason, to continue
to provide same. It is contemplated that during this period, Genetic Alliance will
be able to cause said trustee to inform all TrialsFinder and Reg4ALL participants
of an impending change of control and/or discontinuance of services, thereby providing
each participant with adequate time to remove any data he or she has entrusted to
the Reg4ALL database or consider alternative arrangements should he or she wish.
The foregoing insurance and trustee arrangement is not yet in place. And until Private
Access has provided evidence acceptable to Genetic Alliance of the insurance and
trustee arrangement described above, Private Access will periodically place into
escrow for Genetic Alliance a current copy of all applicable software code, access
codes, and data encryption keys necessary for such systems’ maintenance and operation,
along with a backup of all associated databases such that, in the event Private
Access is unable or unwilling, for any reason, to continue to provide such services,
Genetic Alliance may contract with a third-party to fulfill these operations in
accordance with the terms of the EULA.
Will Private Access permanently delete and/or destroy
your information if you ask us to?
Yes, subject to the following:
How will Private Access communicate with you?
Private Access may periodically contact you regarding your account, to notify you
of changes to our website or services, and to inform you of changes made in the
privacy policies of third-party services that you have engaged us to assist you
through PrivacyLayer® and/or SetMyPrivacy™ to manage. These communications
will be made via e-mails that contain a link to our secure website but will not
contain any sensitive information about you such as your Privacy Preferences, lifestyle
or health (see examples below). If we later add options to have you authorize us
to contact you by phone, fax, text messages, or other means, we will follow similar
precautions to avoid sending or leaving messages containing sensitive information.
Once you sign in to your Private Access account and successfully authenticate yourself
from your computer or Web-enabled phone or mobile device, you will have access to
the information for which the notice you received pertains, which may include additional
contextual information, alerts that need your attention, or updates from us about
our services or the privacy policies of third-party websites or web-enabled services
you have engaged us to assist you thorough PrivacyLayer® to manage.
Emails we send you will not reveal any sensitive information. The table below shows
A proposed change in privacy settings merits your attention. If you are [Jane Doe],
you can visit PrivacyLayer® to view details by clicking on this link: https://www.privacylayer.org
Subject: Research Opportunity
A research opportunity merits your attention. If you are [Jane Doe], you can visit
PrivacyLayer® to view details by clicking on this link: https://www.privacylayer.org
Does this Privacy Statement apply to business and professional
users of the Private Access websites?
This Privacy Statement contains information about how we collect, use and disclose
information of all visitors to the Private Access website, and individual users
of the services offered by Private Access. Certain individuals such as business
and professional users may also be bound by contractual requirements. Accordingly,
business and professional users of Private Access' services should carefully review
the terms of any contractual requirements applicable to them.
How will Private Access let you know if it updates
this Privacy Statement?
Any updates to this Privacy Statement will be posted here. Most updates are expected
to be editorial in nature or reflect ongoing improvements in our services. If, however,
we make changes to the Privacy Statement that would materially affect your protections
or choices, we will, at least seven (7) days in advance of such change taking effect,
send you an e-mail about the change to your email address in our records, in addition
to posting the new Privacy Statement on our website.
What is the effective date of this Privacy Statement?
This Privacy Statement is effective April 4, 2013.
How can you contact Private Access with privacy questions
If you have any questions, concerns, or complaints about our privacy protections,
please write to us at LegalDept@PrivateAccess.com
or at corporate offices, located at 34 Executive Park, Suite 270, Irvine, CA 92614,
or to call us at (949) 502-7890, and we will attempt to resolve your concerns.
As such terms are used in this Privacy Statement:
"Personal Information" is information you supply to Private Access that allows
you to be individually identified. This includes (a) identifiable contact information,
such as name, address, telephone, and email address, (b) information you provide
about yourself, such as your health or lifestyle information, and (c) "coded information,"
which is the same information as (b), but with all of your identifiers and contact
information removed and a random alphanumeric code assigned to it for search purposes.
"De-Identified Data" means information that does not identify individuals
and with respect to which there is no reasonable basis to believe that the information
can be used to identify individuals. To the extent it pertains to health-related
information, Private Access follows the standard set by a federal law called HIPAA
(the Health Care Portability and Accountability Act), even though Private Access
is not subject to that law. The HIPAA Privacy Rule specifies eighteen (18) data
elements that, alone or in combination, identify a person. These include information
such as your name, address, phone number, social security number, and photos of
your face. Generally speaking, when all 18 of these identifiers are removed, HIPAA
refers to the information that remains as being "de-identified". For more information,
Glossary of HIPAA Terms, posted online by Partners Healthcare Human Research
Thank you for reviewing our Privacy Statement.
End-User License Agreement (EULA)
The following document details the legal
terms that govern the use of PrivacyLayer® and related technology services by Private
Access, which this website owner has elected to use to help assure that your privacy
wishes are respected, including your rights as a user of this system. While
this document is a bit long and somewhat technical, it is important that you read
and understand it.
Why is this so important? If you have
read our Privacy Statement,
you are aware of Private Access’ objective to allow patients to establish
and maintain the desired balance of privacy and access with respect to their personal
health information. And if you’ve reviewed the PrivateAccess® Web site or articles about what
we’re building and the relevance of our technology to helping advance medical
research and care, you also know we’re convinced that permitting consumers
to be confident that their wishes will be respected is essential to creating an
environment of trust. The terms of this agreement are designed to help us
achieve this goal. Please let us know if you have any questions or suggestions.
IMPORTANT – PLEASE READ THIS
This Private Access Agreement with Individual
Users (“Agreement”) governs the terms of the legal relationship
between Private Access, Inc., a California corporation (“Private Access”
(with a space between the two words), “we”, “us”
or “our”) and you (“you”, “your”
or “yourself”), when you create a PrivateAccess® account for
yourself or another person (an “Account”) in conjunction with
your use of this website or any other website employing our PrivacyLayer® technology
This Agreement is entered between you
and us, and is effective as of the date you click on the “CLICK HERE TO ACCEPT”
icon at the bottom of this Agreement. You and we are sometimes together referred
to as the “Parties” and each alone as a “Party.” Any
licensors, licensees, vendors, suppliers, officers, directors, owners, employees,
agents, contractors, and other representatives we employ to help us fulfill our
services and operations are referred to as “Related Parties.”
BY CLICKING THE “CLICK HERE TO
ACCEPT” ICON AT THE BOTTOM OF THIS AGREEMENT, YOU AGREE TO BE BOUND BY
THE TERMS OF THIS AGREEMENT. IF YOU DO NOT AGREE TO THE TERMS OF THIS AGREEMENT,
DO NOT CLICK “CLICK HERE TO ACCEPT” AND INSTEAD CLICK “CLICK
HERE TO DECLINE AND EXIT.”
Privacy Statement, which
is posted on the Site, is incorporated by reference into this Agreement.
Welcome to PrivateAccess®!
is a consumer-centric web-based service
offered by Private Access, Inc. to help you manage your confidential information.
This service, which you access through creating a PrivateAccess® Account,
lets you create and manage settings called “Privacy Preferences” to
express who may view the information you share through this Site, and how this information
may be used, accessed or disclosed to others whom you choose. You may also
create Privacy Preferences for your children and other persons for whom you serve
as a legal representative regarding the use, access or disclosure of their information.
This agreement covers the use of
PrivacyLayer® by individuals. If you are a professional, organizational or
business user of our services, this Agreement does not apply to you.
1. There is no charge for you to (a) create a PrivateAccess® Account; (b) create and manage Privacy Preferences
regarding the information you share about yourself, your children or others for
whom you are a legal representative (collectively, “Information”); or
(c) view an activity log that details who has requested or viewed your Information,
as well as when these actions have occurred (collectively, “Basic Services”).
2. Both third party entities and we may offer privacy-enabled services that
interact with PrivacyLayer® (collectively, “Service Applications,”
and individually a “Service Application”).
We may charge fees to entities that offer such privacy-enabled services, including
fees charged to entities in which we may have an ownership interest. (You may
click here for more
details regarding current Service Applications, including Service Applications offered
by us.) For example, we may charge a transaction fee in connection with a Service
Application that calls upon PrivacyLayer® to determine whether your Privacy Preferences
permit use, access or disclosure of your Information.
3. The fees we charge owners of Service Applications are based on one-time
set-up or custom programming fees for work we perform, annual maintenance fees,
and transactional fees based on the features of PrivacyLayer® operating in the intended
manner. We charge owners of Service Applications fees based upon multiple pricing
structures, including (a) one-time set-up or custom programming, (b) annual maintenance,
(c) transaction-based, and (d) service-based such as leveraging our payment system
to bill for their services. Our business model is for our fees charged for
Service Applications to leverage PrivacyLayer® to be the same regardless of whether
your Privacy Preferences instruct us to withhold or grant access to your Information
to or through such Service Applications.
4. We may share a portion of the fees we receive with third-parties, including
an entity that may have referred you to us and for whom such fees would be appropriate
and consistent with all applicable laws.
5. We may expand our services in the future to include additional services,
possibly including premium features available to individual users for a fee.
You will have the option, without any obligation, to sign-up for these additional
features; and your decision will not affect your right to continue to receive the
Basic Services without charge.
B. Authorized Use of Private
Access, Restrictions, and Disclosures
You must be at least 18 years of age,
legally competent, and a U.S. resident to open an Account.
To open a custodial Account for another
person, you must be the parent, guardian, or other legal representative of the other
person, as defined by applicable law.
PrivacyLayer® provides you with tools
to create Privacy Preferences concerning how much or how little Information you
choose to provide to or through Service Applications. Therefore, to help us be of
the greatest value to you and other members of your family in protecting your privacy
wishes, it is very important that you provide accurate and up to date Information
about yourself or, if you are creating a custodial account, about the person who
is the subject of the custodial account. We may remind you from time to time to
update your Information.
We agree to only disclose, and you agree
that we can disclose, Information in a manner that is consistent with your Privacy
Preferences and our Privacy Statement. In order to help protect you and others against
identity theft or fraud, you grant us permission to verify (a) that you are who
you say you are, and (b) in the case of a custodial account, your relationship with
any person who is the subject of that account.
You acknowledge and agree that we are
not engaged in the practice of medicine, either through the Site or associated services,
and that the Site is not a substitute for professional medical advice. The Information
in your Account is provided by you or others, not us. IF YOU HAVE ANY QUESTIONS
ABOUT YOUR MEDICAL CONDITION OR NEED MEDICAL HELP, YOU SHOULD CONSULT WITH A HEALTHCARE
PROVIDER. WE HAVE NO RESPONSIBILITY TO PROVIDE MEDICAL ADVICE OR TO TAKE ANY
MEDICALLY RELATED ACTION IN RESPONSE TO INFORMATION YOU PROVIDE ON THE SITE OR THROUGH
ANY SERVICE APPLICATION.
We use various interactive security and
identity verification controls to help protect the Information in your Account,
including user names, passwords, challenge questions, and user images such as site
keys (collectively, “Verification Controls”). You are responsible
for safeguarding and maintaining the confidentiality of Verification Controls associated
with your Account. You are solely responsible for any consequences arising from
or relating to your sharing of, or your accidental disclosure of, your Verification
Controls or any other inadequate security protections on your part.
In the interest of limiting unauthorized
access to your Information, you should notify us promptly after learning of any
unauthorized use affecting your Account, including a compromise of your password.
We will also notify you promptly (but in no event later than required by applicable
law) after we learn of any unauthorized use affecting your Account.
This Site or Service Applications you
use might contain health-related information that you may find to be sexually explicit
or otherwise offensive. We will not be responsible for any impact of such materials
upon you or others.
We may remove content from your Account
without prior notice if we reasonably believe it is in violation of this Agreement.
We do not assume responsibility to respond
or take specific action in response to communications with us that are not in the
We reserve the right to change the content
of PrivacyLayer® and to suspend or deny access to PrivacyLayer® services for maintenance
You may create Privacy Preferences to
grant access or allow disclosure of your Information to a family member, friend,
caregiver, health care provider, researcher, personal health record, or other person
or entity, or to communicate your instructions or preferences to us or a Service
Application about how your Information is to be used or shared. You should consider all such decisions carefully.
Although we will communicate your Privacy Preferences to others on your behalf,
once your Information is conveyed to a third party in accordance with your Privacy
Preferences, we can make no warranty whatsoever concerning the third party’s
actions, including his or her use or further disclosure of your Information.
Accordingly, neither this Agreement nor our
Privacy Statement applies
to any third party’s use or disclosure of your Information.
C. Termination of an Account
Termination of Your Account by You
terminate your Account at any time and for any reason by logging into your Account
and following the instructions for terminating Accounts.
Termination of Your Account by Us
We may terminate your Account as follows:
Violation of this Agreement. We may suspend or terminate your Account without
notice if we believe you have violated any of the terms of this Agreement.
Death of a User. We may close an Account upon evidence of the
death of an Account holder, or if requested, make arrangements for its use by the
legal representative of the deceased Account holder.
Inactivity. We reserve the right to close an Account if
the Account has not been accessed or updated for a commercially reasonable period
of time, which will not be less than 12 months. Before doing so, we will make commercially
reasonable efforts to contact you.
Custodial Rights Disputed. If we are informed of a dispute regarding
the rights of a person who is the subject of a custodial Account, we reserve the
right to close the custodial Account without notice.
Discontinuation of Our Services. We may close your Account if we elect to discontinue
all or part of our services. Before doing so, we will, if feasible, make commercially
reasonable efforts to notify you.
Security Concerns. We may suspend or close your Account without
notice if we believe doing so is reasonably needed to protect your Information or
When an Account is Terminated
When an Account is terminated, the Information
in it becomes immediately inaccessible. We will then destroy the Information in
accordance with our Privacy Statement.
After an Account is terminated, we will
have no further obligation to provide services to you, although our responsibilities
for handling, protecting, and securely destroying your Information, as set forth
in our Privacy Statement, will continue.
After an Account is terminated, no entity
that holds any Information concerning which your Privacy Preferences previously
pertained will be able to verify your privacy wishes from Private Access. You should
check the Terms
of Use and
treat your Information if they do not, or cannot, determine your Privacy Preferences.
1. We agree to use commercially reasonable precautions – including administrative,
technical and physical measures – to safeguard any Information you provide
us from unauthorized access, disclosure, alteration, misuse or destruction.
2. You agree to use the PrivacyLayer® service, your PrivateAccess® Account,
and this Site in a manner consistent with all applicable laws, and solely for your
own personal, non-commercial purposes.
3. If you assert that you are the parent, guardian, or other legal representative
of another person, you acknowledge and affirm that the Information you provide to
us in this regard is accurate.
4. You agree not to include in your Account any material that in the absence
of express permission, would infringe on any third party’s rights, including
copyright, intellectual property, privacy and publicity rights, unless you have
the appropriate legal authority to use such material and, by your action in doing
so, you grant us all necessary rights, free of royalty and reporting requirements.
5. You agree that the contents of your Account will not include any unlawful,
disparaging, libelous, or otherwise objectionable content as reasonably determined
6. You agree not to use the Site, the PrivacyLayer® service, or your PrivateAccess®
Account in any manner that could damage, disable or impair any of them.
7. You agree not to attempt to use the Site, the PrivacyLayer® service, or
your PrivateAccess® Account to gain unauthorized access to any other website or
service, accounts not registered to you, or computer systems or networks.
8. You agree not to engage in any unlawful activities in connection with your
use of the Site, the PrivacyLayer® service, or your PrivateAccess® Account.
9. You agree not to modify, copy, distribute, transmit, display, perform,
reproduce, publish, license, sublicense, rent, lease, frame, reverse engineer, de-compile,
disassemble, modify, translate, make any attempt to discover the source code, algorithms,
or processes of the Site, the PrivacyLayer® service, or your PrivateAccess® Account,
or create derivative works from, transfer, or otherwise use in whole or in part
information, software, products or services obtained from this Site, except for
the purposes expressly provided therein, without our (and, if applicable, Related
Parties’) prior written approval. If you download any information or software
from this Site, you agree that you will not remove or obscure any copyright or other
notices or legends contained in any such information.
10. You agree
to not use our Trademarks and Service Marks (as defined herein) for any purpose
including, but not limited to, use as metatags on other pages or sites on the World
Wide Web our (and, if applicable, our Related Parties’) express written consent.
11. To the best
of our knowledge and belief, your use of PrivateAccess® in accordance with its intended
purpose and the express terms of this Agreement does not infringe upon any third
party's intellectual property rights including copyrights, trademarks, trade secrets
or patents. Should your use of the PrivacyLayer® service or any other portion of
the technology provided by Private Access become, or in our sole opinion be likely
to become, the subject of a claim of infringement or trade secret misappropriation,
we shall at our option and expense: (a) defend and hold you harmless with respect
to any such action against you; (b) obtain for you the right to continue to use
PrivateAccess®; (c) replace or modify PrivateAccess® so its use becomes non-infringing
or otherwise lawful; or (d) discontinue the service in accordance with the
terms of Section C.2.(e), above. THIS SHALL BE YOUR SOLE AND EXCLUSIVE REMEDY FOR
INTELLECTUAL PROPERTY INFRINGEMENT.
E. WARRANTY, DISCLAIMER AND
LIMITATION OF LIABILITY
WARRANTY AND DISCLAIMER
PRIVATE ACCESS, INC. WARRANTS THAT PrivacyLayer®
AND RELATED FEATURES OF YOUR PrivateAccess® ACCOUNT WILL PERFORM SUBSTANTIALLY IN
ACCORDANCE WITH THE SERVICE DESCRIBED IN THIS AGREEMENT AND ON OUR SITE. IN THE
EVENT OF THE NON-AVAILABILITY OF THE SITE, OR AN INTERRUPTION OR DELAY IN OUR ABILITY
TO SUPPORT ANY SERVICE APPLICATIONS FROM PrivacyLayer®, WE WILL USE COMMERCIALLY
REASONABLE EFFORTS TO RESUME SUCH SERVICES. IN ADDITION, IF YOU REPORT A DEFECT
TO US, WE WILL USE COMMERCIALLY REASONABLE EFFORTS TO REMEDY THE NON-CONFORMANCE.
THE FOREGOING SHALL BE YOUR SOLE AND EXCLUSIVE REMEDIES FOR ANY BREACH OF WARRANTY;
AND OTHERWISE PrivacyLayer® IS PROVIDED ON AN “AS-IS” AND “AS
AVAILABLE” BASIS. WE GIVE NO EXPRESS WARRANTIES, GUARANTEES OR CONDITIONS.
WE EXCLUDE ANY IMPLIED WARRANTIES INCLUDING THOSE OF MERCHANTABILITY, FITNESS FOR
A PARTICULAR PURPOSE, AND WORKMANLIKE EFFORT. YOU MAY HAVE ADDITIONAL CONSUMER RIGHTS
UNDER YOUR LOCAL LAWS THAT THIS AGREEMENT CANNOT CHANGE.
LIMITATION OF LIABILITY
WE AGREE TO (A) COMPENSATE YOU IN THE
AMOUNT OF ANY DIRECT DAMAGES YOU HAVE ARISING FROM A BREACH OF SECTION D.1 ABOVE
IF THE BREACH IS CAUSED BY THE NEGLIGENCE OR WILLFUL MISCONDUCT OF PRIVATE ACCESS,
INC.; AND (B) INDEMNIFY YOU PURSUANT TO THE TERMS OF SECTION D.11, ABOVE. OTHER
THAN THE FOREGOING LIABILITIES WE HAVE TO YOU, AND YOUR LIABILITY TO US FOR ANY
AND ALL DAMAGES CAUSED BY YOUR BREACH OF ANY OTHER PROVISION OF SECTION D ABOVE,
NEITHER YOU OR WE CAN RECOVER ANY OTHER DAMAGES, INCLUDING CONSEQUENTIAL, SPECIAL,
INDIRECT, INCIDENTAL OR PUNITIVE DAMAGES.
WITHOUT LIMITING THE FOREGOING, PRIVATE ACCESS, INC. SHALL NOT BE LIABLE FOR THE
CONSEQUENCES OF ANY ACTIONS TAKEN (OR NOT TAKEN) BY ANY THIRD PARTY(IES) WHO OBTAIN
YOUR INFORMATION BASED UPON THE PRIVACY PREFERENCES YOU SET OR CHOICES YOU EXERCISE
ON THE SITE TO ALLOW OTHERS TO ACCESS, ADD, MODIFY, USE, OR DISCLOSE YOUR INFORMATION.
THIS LIMITATION OF LIABILITY APPLIES EVEN IF THE REMEDY DOES NOT FULLY COMPENSATE
FOR LOSSES, OR FAILS OF ITS ESSENTIAL PURPOSE, OR IF EITHER PARTY SHOULD HAVE KNOWN
ABOUT THE POSSIBILITY OF DAMAGES.
SOME STATES DO NOT ALLOW THE EXCLUSION OR LIMITATION OF INCIDENTAL OR CONSEQUENTIAL
DAMAGES, SO THE ABOVE LIMITATIONS OR EXCLUSIONS MAY NOT APPLY TO YOU.
F. Intellectual Property Rights
Subject to our Privacy Statement and applicable
law, all right, title and interest in and to PrivacyLayer®, the PrivateAccess® technology
and any related content contained on this Site (excluding your Information) is our
exclusive property or, where applicable, that of our Related Parties and other third
Private Access, Inc., the Private Access
logo and other Private Access trademarks and service marks referenced herein, including
but not limited to PrivateAccess®, PrivacyLayer®, Privacy Assured™, RecruitSource®,
RecordsAgent®, RecordsValet™, the phrase “Creating an environment of trust™”
and the Privacy Assured shield (collectively, the “Trademarks and Service
Marks”) are our trademarks and service marks. Other trademarks and service
marks used on the Site are the property of third parties.
You may use PrivacyLayer®, your PrivateAccess®
Account and the other features of this Site owned by Private Access in accordance
with the terms of this Agreement. Except as expressly provided herein or stated
in writing by us and, if applicable, our licensors, no other license is granted
expressly or impliedly by estoppel or otherwise under any patent or copyright or
to use any trademark, service mark, trade secret or other intellectual property
of Private Access, Inc. or any other party. Portions of this Site, PrivacyLayer®
and the PrivateAccess® services utilized herein may be covered by one or more patents
owned by Private Access regarding individual control over confidential information,
and various clinical trials recruitment services. Without limitation, this includes
United States Patent Numbers 7,028,049; 7,664,753; 8,131,764, US Patent Application
Number 2010-0250285, and other patents pending.
G. Governing Law, Dispute Resolution,
All matters relating to the PrivacyLayer®
service or any other portion of the technology provided by Private Access through
or with regard to the Site and our services will be governed by the laws of California,
without regard to conflicts of laws provisions.
If you have a complaint, inquiry, or dispute
(collectively, a “dispute”) regarding any aspect of the Site or our
services, you are encouraged to bring it to our attention, using the procedures
shown on the Site for contacting us. If we are unable to resolve the dispute ourselves
(including through termination in accordance with this Agreement), either Party
may submit the dispute to final and binding arbitration in Orange County, California,
in accordance with the rules and procedures of the American Arbitration Association,
with each Party being responsible for its own costs and fees, and the joint costs
of arbitration to be shared equally by the Parties.
BY AGREEING TO ARBITRATION IN THIS AGREEMENT,
YOU AND WE UNDERSTAND THAT BOTH PARTIES ARE RELINQUISHING ANY RIGHT TO PURSUE CLAIMS
OR HAVE DISPUTES RESOLVED IN A COURT OF LAW, TO COMPULSORY DISCOVERY, OR TO THE
APPEAL OF ANY ADVERSE ARBITRATION DECISION.
Any cause of action either Party may have
must be commenced within one year after the claim or cause of action arises or is
actually known or should have reasonably been known to the disputing party. To the
fullest extent permitted by applicable law, no arbitration or claim under this Agreement
may be joined to any other arbitration or claim, including any arbitration or other
legal proceeding involving any other current or former user of the Site and/or our
services, and no class action proceedings will be permitted. Notwithstanding any
other provision in this Agreement, each of the Parties will be
allowed to apply for injunctive relief. The Parties agree that the jurisdiction
and venue for such action seeking injunctive relief will be the courts of the county
in which our principal place of business is located, or federal district court for
the district in which our principal place of business is located. The Parties
further agree that a judgment in any such action may be enforced in other jurisdictions
by suit on the judgment or ruling, or in any other manner provided by law.
H. Procedure for Making Claims
of Copyright Infringement
If you believe that your work has been
copied and is accessible on this Site, through PrivacyLayer® or in any other component
of our technology in a way that constitutes copyright infringement, please write
to our Copyright Agent at our headquarters at the address shown
here or email us at
The requirements for what you must include
in your notice are in the Digital Millennium Copyright Act, 17 U.S.C. § 512.
Any failure or delay by either Party to
enforce any part of this Agreement will not constitute a waiver of that Party’s
rights under this Agreement. You consent to receive communications from us at the
email address you provide on the Site and in any other method you select in your
Account settings. The Parties agree that all agreements, notices, disclosures and
other communications provided by one Party to another Party electronically satisfy
any legal requirement that such communications be in writing. We have no responsibility
for any third-party websites not operated by us to which this Site and our services
may be linked. This Agreement constitutes the entire agreement and supersedes any
prior agreement or communications between you and us regarding the Site, PrivacyLayer®,
PrivateAccess® and our related technology. If you have any questions about this
Agreement, please contact us at LegalDept@PrivateAccess.com.
J. Right to Change Agreement
We reserve the right to change this Agreement
at any time, provided that we notify you at least seven (7) days in advance of the
effective date of any changes that we determine to be material by (a) sending you
an e-mail to the address in your Account, and (b) posting
the revised Agreement on the Site, indicating the effective
date of the revisions. Your continued access or use of the Site after the effective
date of the revisions constitutes your acceptance of the new Agreement.
Copyright © 2009-2013 Private Access,
Inc. All rights reserved.
Version: April 4, 2013
The current release of PrivacyLayer® only provides
for creating Privacy Preferences in connection with disease advocacy groups, clinical
research, and Information you may wish to be shared with certain third-party platforms.
In subsequent releases, we anticipate adding other uses as part of our Basic Services.