Become a CoRDS Partner

Join CoRDS. Help accelerate research. 

"Creating a registry of patients is the single most valuable action a rare disease community can take. The registry provides critical disease knowledge which makes that disease easier to study, increasing the probability a treatment can be developed." - David Meeker, CEO, Genzyme

Data on rare diseases is often limited, incomplete, and difficult to find or access. A patient registry is an effective tool to gather information useful to researchers studying rare diseases. Rare-disease Patient Advocacy Groups (PAGs) often support research efforts for their disease of interest; however, establishing and maintaining a patient registry can require a significant amount of time and resources.

Launching a Patient Registry with CoRDS

CoRDS has developed an efficient process in which we work side-by-side with PAGS to launch a patient registry. The amount of time to launch a patient registry will vary, depending on if the general or disease-specific option is selected.

Steps to Launch a Registry

Review & Sign Participation Agreement: required for PAG to access data for non-research purposes

Select Type of Registry & Questionnaire

General Registry: CoRDS questionnaire may be utilized

Disease-specific Registry: Disease-specific registry will be developed

Implementation, Demo & Beta Testing:  Questionnaire is formatted and uploaded into the CoRDS Registry Portal. CoRDS will set up a demo to review the Registry Portal and FTP site where PAGs could access data for non-research purposes. PAGs will be provided a test username and password so they may review the portal at their convenience.

Obtaining IRB Approval: If a disease-specific registry is being launched, CoRDS personnel will submit the disease-specific questionnaire to Sanford IRB for approval after the questionnaire and portal have been reviewed and finalized.

Communication to Patient Group members: PAGs notify members about the opportunity to enroll. CoRDS materials are provided in the CoRDS toolkit and CoRDS personnel can provide support in reviewing announcements for accuracy and completeness.

If your organization is interested in working with CoRDS to establish a disease specific registry, please contact CoRDS Personnel. Find out more information on our List of Frequently Asked Questions for Organizations.