For accessing Polycystic Kidney Disease data:

Data Use Agreement for access to the Polycystic Kidney Disease Outcomes Consortium (PKDOC) Data Terms and Conditions

I request access to data collected by the Critical Path Institute (C-Path) Polycystic Kidney Disease Outcomes Consortium (PKDOC) for the purpose of scientific investigation, teaching, or the planning of clinical research studies and I agree to the following terms and conditions:

1. All data made available are intended to be de-identified before inclusion in the database. I will not attempt to establish the identity of, or make contact with, any of the subjects.
2. I will not disclose these data beyond the use(s) specifically outlined in this application.
3. I will require anyone with whom I share these data to comply with the terms and conditions of this data use agreement.
4. I will accurately provide any information requested regarding persons who will use these data and the analyses that are planned using these data.
5. I will comply with any rules and regulations imposed by its institutional review board in requesting and using these data.
6. I will not sell any of the PKDOC data unless pursuant to a separately negotiated licensing agreement with a Consortium Member.

If I publish abstracts using PKDOC data from Critical Path Institute, I agree to the following:

7. I will cite the C-Path PKDOC as the source of the data.
8. Group authorship will not be cited in the authorship line of the abstract.

If I publish manuscripts using PKDOC data from Critical Path Institute, I agree to the following:

9. On the author line of the manuscript, after the named authors, I will include the phrase "for PKDOC*" with the asterisk referring to the following statement: "*Data used in the preparation of this article were obtained from the Polycystic Kidney Disease Outcomes Consortium (PKDOC). As such, the investigators within PKDOC contributed to the design and implementation of the PKDOC database and/or provided data, but did not participate in the analysis of the data or the writing of this report."
10. I will submit all manuscripts to the PKDOC consortium prior to submitting them to a journal. This PKDOC review will not be a scientific review but is intended to ensure that I have complied with these Terms and Conditions. The PKDOC will maintain confidentiality of the manuscript and will complete its review within two weeks of receipt.
11. I will ensure that Investigators who utilize PKDOC data use appropriate administrative, physical, and technical safeguards to prevent the use or disclosure of the data other than as provided for by this Agreement.
12. I will report any use or disclosure of the data not provided for by this Agreement of which I become aware as soon as possible but no later than within 5 days of becoming aware of such use or disclosure.
13. PKDOC DATA ARE PROVIDED "AS IS." Neither C-Path nor any PKDOC member makes any representation or warranty, express, implied, statutory or otherwise, with respect to the PKDOC database or the data contained therein.
14. I understand that neither C-Path, nor any PKDOC member, nor any of their respective directors, officers, employees, agents or affiliates, shall have any liability to I(or to anyone using the data on Requesting Institution's behalf or at Requesting Institution's direction) as a result of the use of the PKDOC database or any of the data contained therein (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 PKDOC member has been advised of the possibility of such damage.
15. By accessing the PKDOC Database you agree to indemnify, defend and hold harmless each consortium member 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 your use of the PKDOC Database and/or your possession and use of any data you obtained from the PKDOC 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 you promptly after the indemnified party receives notice of its existence. You shall have the right, at your expense, to employ counsel to defend against the claim, and to compromise, settle or otherwise dispose of the claim, all at your expense, provided that no compromise or settlement of any claim admitting liability of or imposing duties or performance upon any indemnified party may be effected without the prior written consent of such indemnified party. If you 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 the expense of you 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.

IMPORTANT NOTE: It is the policy of Critical Path Institute to add additional PKD 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 any processed data that I download might be preliminary and that results may change as new data are added.

Finally, in the event that I download data from the PKDOC 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 database to determine if updated data have been provided prior to submission of any material for publication.

I understand that failure to abide by these guidelines will result in termination of its access to the PKDOC database as well as any other remedies that may be available to C-Path or PKDOC members pursuant to these Terms and Conditions or applicable law.