Date of Defense:
April 10, 2015
Introduction: A patient registry is a useful tool that can be used to collect valuable an d meaningful data about rare diseases. The Coordination of Rare Diseases at Sanford (CoRDS) is an international patient registry based at Sanford Research. CoRDS houses data on individuals diagnosed with a rare disease and those awaiting diagnosis. The mission of CoRDS is to accelerate rare disease research by offering researchers a central resource of de-identified clinical data, creating a way to notify registry participants about research opportunities, and providing a mechanism by which rare disease patient advocacy groups (PAGs) may establish a patient registry for their rare disease of interest.
Purpose: This report describes the CoRDS registry and the proposed mechanisms to enroll participants between July 2010 and September 2013. It also identifies the strengths and weaknesses of the proposed mechanisms and provides a recommendation for improving the proposed mechanisms.
Methods: The proposed mechanisms include establishing partnerships formed with rare disease PAGs, creating a process for in – person enrollment in the Sanford Children’s Hospital and developing a web – based portal for online enrollment.
Results: Between July 1, 2010 and September 30, 2013, 1033 participants enrolled in CoRDS and 195 unique rare diseases were represented in the registry. A secure web – based enrollment portal launched in April 2012 allowed 712 eligible individuals to enroll online. 798 individuals were referred by PAGs that established partnerships with CoRDS. A Clinical Research Associate (CRA) helped 100 Sanford Health patients to enroll in CoRDS.
Discussion: The goal to enroll 1000 participants was reached in September 2013. Although this goal was more than two years overdue, CoRDS has performed well considering the available funding, resources and personnel. Specific strengths that contributed to an increase in participant enrollment during this period of time included developing partnerships with PAGs and launching a disease – specific registry for the National Ataxia Foundation.
Conclusion: While all three proposed mechanisms helped increase the number of participants enrolled