Data Summary Requests

TRiNDS (www.trinds.com) is the Coordinating Center for CINRG and manages requests for CINRG data summaries. We welcome requests to further contribute towards advancing research and impacting the lives of patients and families with neuromuscular and rare diseases.

The requests are restricted to scientists, academic centers, and pharmaceutical companies with hypothesis driven questions leading to publications with CINRG collaboration. Requests are reviewed on a case-by-case and verified for overall feasibility before they can be fulfilled. For assistance in developing hypothesis driven questions please review all of our existing CINRG publications at: https://cinrgresearch.org/publications/. The extensive list of CINRG publications is in chronological order with our most recent publications at the top.

The process for submitting a data summary request is highlighted below:

Allow at least 7-days from submission for the approval process
- Requests are approved by the relevant CINRG Study Chair(s), CINRG CPS Chair and/or CINRG Executive Committee (EC) Chair and Co-Chair
- Approved requests may require additional paperwork such as a Data Transfer Agreement(DTA) and/or service agreement
- Requests from industry or other outside entities to the CINRG network will require a Confidentiality Disclosure Agreement (CDA) from the requestor
Complete the attached CINRG Data Sample Analysis Request Form and send to: cpsrequests@trinds.com
Complete the attached data sheet(s), if applicable: CINRG Becker Data Request Template, CINRG DNHS Data Request Template, CINRG Prednisone Data Request Template
Refer to the Sample Completed Forms for guidance: CINRG Data Sample Analysis Request Form v5.1 Sample Completed Forms