Access GRDR Templates
Use these templates to submit data to the GRDR:
- Informed consent template (Word - 40KB)
- Common data elements (Excel - 49KB)
- Data access request (PDF – 252KB)
- Data submission agreement (PDF – 241KB)
Get More Information
Visit the following links for more information about the GRDR program, rare diseases registries and related topics.
- NIH/NCATS/GRDR® Common Data Elements: A leading force for standardized data collection. Contemp Clin Trials. 2015;20(42):78-80.
- Informed consent template for patient participation in rare disease registries linked to biorepositories. Rare Dis Orphan Drug. 2014;1(2):69–74.
- Informed consent process for patient participation in rare disease registries linked to biorepositories. Contemp Clin Trials. 2012;33(1):5–11.
- The case for a global rare-diseases registry. Lancet. 2011;377(9771):1057–9.
- Patient registry for the overlooked patient. Contemp Clin Trials. 2010;31(5):393.
- Letter to the editor. Contemp Clin Trials. 2010;31(5):393.
- Creating a global rare disease patient registry linked to a rare diseases biorepository database: Rare Disease-HUB (RD-HUB). Contemp Clin Trials. 2010;31(5):394–404.
- Genetics Home Reference, a guide to understanding genetic conditions.
- OrphaNews, the newsletter of the rare diseases community.
Registries for Evaluating Patient Outcomes: A User's Guide: 3rd Edition, which supports the design, implementation, analysis, interpretation and quality evaluation of registries.