Rare Diseases Clinical Research Network Contact Registry

The Rare Diseases Clinical Research Network (RDCRN) Contact Registry is an international patient contact registry sponsored by the National Institutes of Health. This registry collects basic data (i.e. contact information, diagnosis, medical history) to be stored in a secure, computerized database and used for the purpose of providing targeted information regarding a specific rare disease. Registrant information is not shared with anyone without the registrant’s permission and is stored in a secure, computerized database through the RDCRN’s Data Management and Coordinating Center (DMCC).

Function

The RDCRN contact registry is utilized by rare disease researchers to identify and recruit patients who are eligible for participation in future research studies. The data is anonymously reported by patients or family members and they may also provide their contact information so that they may be notified in the case that the patient qualifies for participation in a research study. Additionally, patients receive updates on the progress of research projects in their rare disease of interest (such as site activations or protocol openings) from their rare disease consortium.

Funding

The RDCRN Contact Registry is operated by the Rare Diseases Clinical Research Network which is funded by the National Institutes of Health and the Office of Rare Diseases Research. It is governed by the RDCRN Steering Committee, which is advised by a network-wide Registry Advisory Committee. The advisory committee is composed of principal investigators from network consortia, representatives from patient advocacy and support groups affiliated with consortia, members of the Office of Rare Diseases Research, as well as members of RDCRN Data Management and Coordinating Center. The contact registry is designed, hosted, and maintained by the Pediatric Epidemiology Center at the University of South Florida.

Additional Resources

• Richesson, R. L., Lee, H. S., Cuthbertson, D., Lloyd, J., Young, K., Krischer, J. P. (2009). An automated communication system in a contact registry for persons with rare diseases: Scalable tools for identifying and recruiting clinical research participants. Contemporary Clinical Trials, 30(1): 55-62. http://www.ncbi.nlm.nih.gov/pubmed/18804556

• Richesson, R., Sutphen, R., Shereff, D., Krischer, J. (2011). The rare diseases clinical research network contact registry update: Features and functionality. Contemporary Clinical Trials. (In press.)

External links

• RDCRN Contact Registry
• Rare Diseases Clinical Research Network (RDCRN)