Terms and Conditions
For accessing and using data within the Critical Path Institute CPAD Database:
I request access to data collected from multiple data custodians and collated by the Critical Path Institute (C‑Path) for the Critical Path for Alzheimer’s Disease (CPAD) Database (the “Data”) for the purpose of scientific investigation, teaching or the planning of clinical research studies and agree to the following terms and conditions:
- I will ensure appropriate administrative, technical, and physical safeguards are in place to prevent unauthorized use, access, transfer, disclosure or publication of the Data.
- I will not disclose, release, sell, rent, lease, loan, or otherwise grant access to the Custodian Data covered by this Agreement to any third party.
- I will ensure that access to the Data shall be limited to individuals from my organization on a need-to-know basis only.
- I will only share the Data with employees from my organization who are bound to comply with the terms and conditions of this data use agreement.
- I will accurately provide any information requested regarding persons who will use the Data and the analyses that are planned using the Data.
- I will use the Data for the sole purpose of conducting Research.
- I will not use the Data beyond the use(s) specifically outlined in my application.
- I will comply with any rules and regulations imposed by my institution and its institutional review board in requesting and using the Data.
- I will use the Data for legitimate interests in compliance with all applicable federal, state, local, international, health authority and institutional laws, rules, regulations, orders and guidelines; including HIPAA and GDPR.
- I will not use the Data to attempt to determine, or determine, the identity of any of the participants in a registry, study or trial or contact any individuals.
- I will report to C-Path any use, disclosure or publication of the Data not expressly permitted by this Agreement within 48 hours of becoming aware of any such use, disclosure or publication.
- I will not attempt in any way to patent know-how, knowledge, algorithms or other intellectual property generated by the use of the Data.
- I will promptly destroy all copies of the Data upon written notification from C‑Path or upon the completion of my Research.
- I acknowledge that no consortium member nor data custodian makes any representation or warranty, express, implied, statutory or otherwise with respect to the Data.
- I acknowledge that no consortium member nor data custodian, nor any of their respective directors, officers, employees, agents or affiliates shall have any liability to me as a result of my use of the Data (whether as a result of direct, indirect, incidental, special, exemplary, punitive, consequential or other damages) however caused and on any theory of liability. This limitation will apply even if a consortium member or data custodian has been advised of the possibility of such damage.
- By accessing the Data, I agree to indemnify, defend and hold harmless Critical Path Institute (C‑Path), each consortium member, each data custodian and each of their respective directors, officers, employees, agents and affiliates (each an "indemnified party" and collectively, the "indemnified parties"), from and against any and all liabilities, losses, damages, costs and expenses (and all legal costs including reasonable attorneys' fees, court costs, expenses and settlements resulting from any action or claim) incurred by, or asserted against any indemnified party arising from or relating to any claim or action brought by a third party that arises from or results from my use of the CPAD Database and/or my possession and use of any data I obtained from the CPAD Database, whether by download or otherwise. If any such claim or proceeding arises, the applicable indemnified party shall give written notice of the claim to me promptly after the indemnified party receives notice of its existence. I shall have the right, at my expense, to employ counsel to defend against the claim, and to compromise, settle or otherwise dispose of the claim, all at my expense, provided that no compromise or settlement of any claim admitting liability of or imposing duties or performance upon any indemnified party may be affected without the prior written consent of such indemnified party. If I do not initiate efforts to defend against or resist the claim within thirty (30) days after receiving notice from any indemnified party, the indemnified party shall be free to investigate, defend, compromise, settle or otherwise dispose of the claim and incur other costs in connection therewith, for the account and at my expense, in such manner as the indemnified party deems in its best interest. Indemnification does not apply if the requester is a US Government employee, acting on behalf of the US Government.
- If I publish abstracts using the Data, I will cite the CPAD Database as the source of the data.
- If I publish abstracts using the Data, group authorship of the CPAD Database will not be cited in the authorship line of the abstract.
- If I publish manuscripts using the Data, I will include the phrase “for the CPAD Database *" on the author line of the manuscript, after the named authors, with the asterisk referring to the following statement:
“* Data used in the preparation of this article were obtained from the Critical Path for Alzheimer’s Disease (CPAD) Database. In 2008, Critical Path Institute, in collaboration with the Engelberg Center for Health Care Reform at the Brookings Institution, formed the Coalition Against Major Diseases (rebranded to Critical Path for Alzheimer’s Disease (CPAD) consortium in 2018). The consortium brings together patient groups, biopharmaceutical companies, and scientists from academia, the U.S. Food and Drug Administration (FDA), the European Medicines Agency (EMA), the National Institute of Neurological Disorders and Stroke (NINDS), and the National Institute on Aging (NIA). The Critical Path for Alzheimer’s Disease (CPAD) consortium includes over 200 scientists from member and non-member organizations. The data available in the CPAD database has been volunteered by CPAD member companies and non-member organizations”.
20. If I publish manuscripts using the Data, I will include language similar to the following in the methods section of my manuscripts to accurately acknowledge data gathering by CPAD:
“Data used in the preparation of this article were obtained from the Critical Path for Alzheimer’s Disease (CPAD) Database. As such, the investigators within CPAD contributed to the design and implementation of the CPAD database and/or provided data, but did not participate in the analysis of the data or the writing of this report.”.
21. I will submit all manuscripts using the Data to CPAD prior to submitting them to a journal. This review will not be a scientific review, but is intended to ensure that the items required above are correctly implemented. CPAD will maintain confidentiality of the manuscript and will complete its review and approval within two weeks of receipt.
22. In the event that I download data from the CPAD Database for the purposes of analysis and future publication in the form of abstracts and/or publications, I will note the date of the data I download, and I will check the data base to determine if updated data have been provided prior to submission of any material for publication.
IMPORTANT NOTE: It is the policy of CPAD to add additional data as it becomes available. However, data analysis is expected to take years as methods for analysis of these data evolve. Therefore, I understand that outputs performed on the data by the CPAD Data Platform may change as new data are added.
23. I will comply with any local regulations that govern in the location where the Data are held by the recipient.
24. I have the authority to bind my institution to these Terms and Conditions.
I understand that failure to abide by these guidelines will result in termination of my access to the CPAD database as well as any other remedies that may be available to C-Path or CPAD members pursuant to these Terms and Conditions or applicable law.