For accessing and using data within the D-RSC Data Platform:

Terms and Conditions

I request access to data collected and collated by the D-RSC Data Platform for the purpose of scientific investigation, teaching or the planning of clinical research studies and agree to the following terms and conditions:

1. 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 have the authority to bind my institution to these Terms and Conditions.
4. I will only share these data with employees from my organization who are bound to comply with the terms and conditions of this data use agreement.
5. I will accurately provide any information requested regarding persons who will use these data and the analyses that are planned using these data.
6. I will comply with any rules and regulations imposed by my institution and its institutional review board in requesting and using these data.
7. I will not sell any of the data comprising the D-RSC Data Platform unless pursuant to a separately negotiated licensing agreement with the owner of the original data.
8. I will not attempt in any way to patent know-how, knowledge, algorithms or other intellectual property generated by the use of these data.
9. I will ensure that investigators who utilize D-RSC 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.
10. I will report any use or disclosure of the data not provided for by this Agreement of which I become aware within 5 days of becoming aware of such use or disclosure.
11. I acknowledge that no consortium member makes any representation or warranty, express, implied, statutory or otherwise with respect to the D-RSC Data Platform or the data contained therein.
12. I acknowledge that no consortium member, 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 D-RSC Data Platform 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 consortium member has been advised of the possibility of such damage.
13. By accessing the D-RSC Data Platform, I agree to indemnify, defend and hold harmless Critical Path Institute (C­Path), 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 my use of the D-RSC Data Platform and/or my possession and use of any data I obtained from the D-RSC Data Platform, 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 effected 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.
14. If I publish abstracts using data from the D-RSC Data Platform, I will cite the D-RSC Data Platform as the source of the data.
15. If I publish abstracts using data from the D-RSC Data Platform, group authorship of the D-RSC Data Platform will not be cited in the authorship line of the abstract.
16. If I publish manuscripts using data from the D-RSC Data Platform, I will include the phrase “for the D-RSC Data Platform *" 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 D-RSC Data Platform. As such, the investigators within the organizations that contributed data to the D-RSC Data Platform assisted with the design and implementation of the data platform and/or provided data, but did not participate in the analysis of the data or the writing of this report.”

17. If I publish manuscripts using data from the D-RSC Data Platform, I will include language similar to the following in the methods section of my manuscripts to accurately acknowledge data gathering by the D-RSC Data Platform.

    “Data used in the preparation of this article were obtained from the D-RSC Data Platform. The D-RSC Data Platform initiative is a public­private partnership funded by the Parent Project Muscular Dystrophy (PPMD) and launched in August of 2015 by Critical Path Institute (C­Path)”

18. I will submit all manuscripts to the D-RSC Coordinating Committee 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. The D-RSC Coordinating Committee will maintain confidentiality of the manuscript and will complete its review within two weeks of receipt.
19. In the event that I download data from the D-RSC Data Platform 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.
20. I will comply with any local regulations that govern in the location where the data are held by the recipient.
21. In the case of unauthorized access and/or use of data provided by C-Path, I shall notify C-Path within 5 days of becoming aware of such use or disclosure.

IMPORTANT NOTE: It is the policy of the D-RSC Data Platform to add additional data as it becomes available. Therefore, I understand that outputs performed on the data by the D-RSC Data Platform may change as new data are added.

I understand that failure to abide by these guidelines will result in termination of my access to the D-RSC Data Platform.