NIH’s National Center for Advancing Translational Sciences (NCATS) www.ncats.nih.gov is developing the Global Rare Diseases Patient Registry (GRDR) https://grdr.ncats.nih.gov. The plan is to develop a web-based resource to aggregate, secure, and store de-identified patient information available from many different registries for rare diseases.
GRDR began as a pilot project following a 2010 workshop sponsored by the NIH Office of Rare Diseases Research (ORDR) http://rarediseases.info.nih.gov. The pilot project concluded in 2012 and included 12 patient advocacy group registries. The project involved validating and implementing Common Data Elements (CDE).
Based on the lessons learned from the pilot, the ORDR staff at NCATS started taking the next steps to further develop the CGDR program and are actively working with the rare disease research community.
This includes NIH Institutes and Centers, Patient-Centered Outcomes Research Institute www.pcori.org, International Rare Diseases Research Consortium www.irdirc.org, along with healthcare providers, patients, patient advocacy groups, the pharmaceutical and biotech industries, and other researchers to develop a range of tools and resources. Such resources could include the GRDR data model, an institutional review board, CDEs, data policies, informed consent templates, and patient registry template software.
The Marshfield Clinic Research Foundation (MCRF) www.marshfieldresearch.org is going to play an important role in supporting the GRDR program with their new clinic software. Developed as a collaborative effort of MCRF’s Biomedical Informatics Research Center www.marshfieldresearch.org/birc/pages/default.aspx with its Clinical Research Center www.marshfieldresearch.org/crc, the software is available free of charge to institutions and patient advocacy organizations that are developing rare disease registries to be included in the GRDR.
“We’ve been working with other institutions to develop methods to bring registries together”, said Dr. Robert Haws, Director, MCRF Clinical Research Center, and member of the GRDR Steering Committee.
The registry software is intuitive, robust, user-friendly, and has the ability to communicate with other database programs. According to Haws, “Because rare diseases don’t always get the attention they need, we need to bring together data and patients to improve lives.”