Effective June 17, 2016
About the Site
The following terms constitute an agreement between you and the operator of www.gistpatientregistry.org (the “Site”). This agreement governs your use of the Site, as a registered member as described below: By accessing or using the Site, you agree to be bound by the terms of this Agreement.
An organization called the Life Raft Group (LRG) wants to find out more about a cancer called Gastrointestinal Stromal Tumors (GIST). To collect this information, LRG has created GIST Patient Registry Online, an online research registry.
Scientists studying GIST and related diseases need more accurate, real-world information to understand how the disease affects people. The purpose of the Life Raft Group GIST registry, also known as GIST Patient Registry Online, is to collect and store medical and demographic information, including family history of cancer, from individuals within this disease community. Information from patients in this registry will be used for medical research to better understand GIST.
Members may also benefit from using the Site as a place where they can store and review details of their disease and treatment. Tracking disease progression statistics and medication history from a central location may be a useful tool to patients, caregivers and the medical professionals they work with.
To become a member GIST Patient Registry Online requires that you are either a diagnosed GIST patient or caregiver for a patient with said disease.
Acceptable and Lawful Use of Site by Members
Children under the age of 17 are prohibited from registering as members. By registering as a member you represent that you are age 17 or older. Parents or guardians of a child who is a GIST patient may open an account as a caregiver to contribute medical updates on behalf of their child. Children must be at least 7 years of age and sign an assent form in order for their parent or guardian to register.
Members shall not post or upload any information or other content on the Site that (a) is false, inaccurate or misleading; (b) is obscene or indecent; (c) infringes any copyright, patent, trademark, trade secret or other proprietary rights or rights of publicity or privacy of any party; or (d) is defamatory, libelous, threatening, abusive, hateful, or contains pornography. Members may not use the Site to conduct any activity that is illegal or violates the rights of others, provide instructional information about illegal activities, or promote physical harm or injury against any group or individual.
No Interference with Operation of Site
All members represent and warrant that the information they provided when registering as a member, and all information that they subsequently provide regarding themselves and their membership, is true and accurate and not misleading.
You may not use any robot, spider, scraper, or other automated means to access the Site or content or services provided on the Site for any purposes. You may not post content on the Site that contains any viruses, Trojan horses, worms, time bombs, spiders, or other computer programming routines that are intended to damage, detrimentally interfere with, surreptitiously intercept or expropriate any system, data or personal information. You shall not attempt to make the Site unavailable through denial-of-service attacks or similar means. You shall not collect information about our members to facilitate the sending of unsolicited bulk communications such as SPAM or SPIM or allow others use of your membership account to take such actions.
During the study, the investigator and the study staff will use, collect, and share health information about you (your “records”). Your records may include any information about you that you provide, such as your name, address, phone number, and medical information. The registry aims to share detailed medical and other information with researchers, while still protecting your privacy. This is done by hiding the name, address and other “identifying” information from the researchers. We call this information “de-identified” because it has been removed of all personal identifiers. Your personal information (such as your name, address, or other information that identifies you or your family) will be labeled with a code number and stored in a secure place and protected with a password. Only authorized people who work in the registry will know the code and be able to identify you if needed. The de-identified data collected and compiled by the registry belongs to the GIST community. The Life Raft Group is the guardian of the information contained within the registry. If a researcher wants to access your name or other identifying information, the study staff will ask your permission first.
Instances where a member’s data, including personal information, may be used and disclosed include, but are not limited to, the following:
- Internally, as needed, for research, maintenance and operation of the site in order to create the best possible tools and functionality for patients.
- In the case of an emergency or other circumstance that we determine requires a member of the management team to directly contact the member.
- Where required by law or to comply with legal process.
- In the event GIST Patient Registry Online goes through a business transition, such as a merger, acquisition by another organization, or sale of all or a portion of its assets, member data, including personal information, might be among the assets transferred. Members will be notified both via e-mail and a notice posted on this site of any such change in ownership or control.
GIST Patient Registry Online holds the safety of its members in highest regard. To this end, we will not share or sell a user’s personal information (such as name and mailing address that could be used to identify you) for commercial purposes. GIST Patient Registry Online does reserve the right to share aggregated member data (e.g. totals, trends and percentages) that are stripped of individual account holder identifiers. Information from members will be used for medical research to better understand GIST. Scientists studying GIST need more accurate, real-world information to understand how the disease and treatments affect people.
In the course of using GIST Patient Registry Online, members may voluntarily share information that could be used to reasonably identify them including name, images and e-mail address. When a member chooses to share personal information or images they accept responsibility for this waiver of their privacy.
Digital Millennium Copyright Act
If you are a copyright owner or an agent thereof and believe that any User Submission or other content at this Site infringes upon your copyright, you may submit a written notification pursuant to the Digital Millennium Copyright Act (“DMCA”) (see 17 U.S.C. 512(c)(3) for further information) by providing our Copyright Agent (listed below) with the following information: (i) an electronic or physical signature of a person authorized to act on behalf of the owner of an exclusive right that is allegedly infringed; (ii) a description of the copyrighted work claimed to have been infringed or if multiple copyrighted works are covered by a notification, a representative list of such works at our Site; (iii) a description of the location on the Site of the allegedly infringing material(s); (iv) your address, telephone number, and e-mail address; (v) a written statement that you have a good faith belief that use of the material(s) in the manner complained of is not authorized by the copyright owner, its agent, or the law; and (vi) a written statement that the information in the notification is accurate, and under penalty of perjury, that you are authorized to act on behalf of the owner of an exclusive right that is allegedly infringed.
If a User Submission that you submitted has been removed as a result of a notification as described above and you believe that such a User Submission or portion of a User Submission was posted lawfully, please contact us about our counter-notification procedure through which you can dispute the allegation and request re-posting of the User Submission content at issue.
GIST Patient Registry Online’s designated Copyright Agent for notice of claims of infringement is:
GIST Patient Registry Online
155 US Hwy 46 Suite 202
Wayne Plaza II
Wayne, NJ 07470
Only notices of alleged copyright infringement and requests about the counter-notification procedures should go to the Copyright Agent; any other feedback, comments, requests for technical support, and other communications should be directed to GIST Patient Registry Online at firstname.lastname@example.org. You acknowledge that if you fail to comply with all of the notice requirements of the DMCA, your notice may not be valid.
Member Password and Login Identity
You are responsible for maintaining the confidentiality of your member password and login, and are fully responsible for all activities that occur under your password or account. All account holders are expected to use GIST Patient Registry Online for legitimate, non-commercial reasons and agree to respect the privacy and preserve the dignity of all site participants. GIST Patient Registry Online reserves the right to remove or suspend any user account that, knowingly or unknowingly, does not comply with these standards of conduct in order to preserve the privacy and well-being of our other members. You agree to immediately notify GIST Patient Registry Online of any unauthorized use of your membership password or login or any other breach of security.
Links to Other Websites
GIST Patient Registry Online may contain links to other websites that are not under the control of GIST Patient Registry Online. The inclusion of any link does not imply endorsement by GIST Patient Registry Online of such site and GIST Patient Registry Online is not responsible for the content of such linked sites.
You agree that GIST Patient Registry Online may, with or without cause, immediately terminate your GIST Patient Registry Online membership or limit or terminate your access to the Site without prior notice. Grounds for termination by GIST Patient Registry Online of a member's membership and use of the Site may include but are not limited to: (a) breaches or violations of this Agreement or other incorporated agreements or guidelines, (b) requests by law enforcement or other government agencies, (c) a request by you (self-initiated membership cancellation), (d) unexpected technical issues or problems, and (e) extended periods of inactivity. GIST Patient Registry Online has no obligation to maintain, store, or transfer information or data to you that you have posted on or uploaded to the Site.
Modifications to this Agreement
Your participation in the registry is voluntary. The care you receive from your regular doctor will not be affected in any way, whether or not you decide to be in the registry. If you want to stop being in the registry, let the investigator or study staff know. You are free to opt-out of participation in the study by filling out an opt-out form, by phone or through the website. If you decide to withdraw from the registry, the investigator or staff may ask you some questions about your experience being in the registry. You are still eligible to take part in other Life Raft Group activities even if you choose to leave this registry.
We reserve the right to modify this Agreement at any time, and without prior notice, by posting amended terms on this Site. We encourage you to review this Agreement periodically for any updates or changes, which will have an update effective date.
Membership with GIST Patient Registry Online is currently free. GIST Patient Registry Online Inc. reserves the future right to change the terms of this Agreement and charge for membership and/or to provide additional optional services for a fee.
Disclaimer of Warranties
This is not a treatment study. Expenses related to your condition and its therapies, doctor charges, other office visits, or other tests are not paid by the registry. You or your medical insurance provider will be responsible for all costs associated with your regular medical treatment.
The Site and the content and services made available on the Site are provided on an “as is” and “as available” basis. GIST Patient Registry Online does not make and disclaims all express and implied warranties and representations, including, but not limited to, any implied warranty of fitness for a particular purpose, with regard to the Site, the Site content, or any advice or services provided through the Site to the extent permitted by law. GIST Patient Registry Online does not warrant that access to the Site or its content or services will be uninterrupted or error-free or that defects in the Site will be corrected.
Limitation of Liability
Under no circumstances shall GIST Patient Registry Online, its partners, contributors, agents, employees, directors, or affiliates be liable for any indirect, incidental, special, or consequential damages (even if it has been advised of the possibility of such damages) due to your use of this Site or due to your reliance on any of the content contained or the services provided on the Site.
You agree to indemnify and hold harmless GIST Patient Registry Online, its officers, employees, agents, subsidiaries, affiliates and other partners, from and against any claims, actions or demands, liabilities and settlements including without limitation, reasonable legal and accounting fees, resulting from, or alleged to result from, your violation of this Agreement.
If you register as a member, you agree that GIST Patient Registry Online may send notices to you by e-mail at the e-mail address you provide when registering to become a member (or which you later update using the functionality of the Site).
Governing Law and Venue
This agreement shall be governed by the laws of the State of New Jersey and the applicable federal laws of the United States of America. All disputes arising under, or in any way connected with membership in or use of the Site, shall be litigated exclusively in the state and federal courts residing in the State of New Jersey, and in no other court or jurisdiction. You hereby submit to the jurisdiction of the state and federal courts sitting in the State of New Jersey.
No Medical Advice
GIST Patient Registry Online does not endorse drugs, diagnose patients or recommend therapy. The site and the content of GIST Patient Registry Online are not provided in the course of a professional relationship between a health care provider and a patient and are not intended to create any patient relationship, nor should they be considered a replacement for consultation with a health care professional. The absence of a warning for a given drug or drug combination in no way should be construed to indicate that the drug or drug combination is safe, effective or appropriate for any given patient. As a user of or visitor to GIST Patient Registry Online you understand and agree that the site, the content any other information that you learn are not intended, designed or implied to diagnose, prevent or treat any condition or disease. You should always consult with a physician if you have questions regarding a medical condition.
GIST Patient Registry Online® and the GIST Patient Registry Online logo are trademarks of the Life Raft Group. You agree not to display or use these trademarks in any manner without GIST Patient Registry Online's prior, written permission.
GIST Patient Registry Online may assign this agreement at any time to a subsidiary or parent company or to a successor to its business as part of a merger or sale of substantially all of its assets. You may not assign or transfer this agreement.
Every effort has been made to ensure that the data and information provided on the Site is accurate, up-to-date, and complete, but no guarantee is made to that effect. Information has been provided for use by researchers and members. GIST Patient Registry Online does not warrant that uses outside of the United States are applicable.
If any provision of this Agreement is held to be unenforceable for any reason, the remaining provisions will be unaffected and remain in full force and effect.
Copyright 2016 GIST Patient Registry Online. Please consult with your doctor, nurse or pharmacist if you have questions about your health and condition.
For any questions or comments, or to report violations of this agreement, contact us at:
GIST Patient Registry Online
Attn: User Agreement Issues
155 US Hwy 46, Suite 202, Wayne Plaza II
Wayne, NJ 07470