Ben’s Friends has a new partner in Coordination for Rare Diseases at Sanford, which collates information on rare diseases to advance research and treatment.
Who is CoRDS?
It is estimated that only 20% of rare diseases have patient registries. The CoRDS Registry was established to facilitate the establishment of rare disease registries for all rare diseases. Collating diagnostic information of all enrolled patients offers the opportunity to perform a comparative analysis across many if not all diseases that will help researchers understand and ultimately develop effective treatments for patients.
Because the lack of information applies to many rare diseases, CoRDS was established to serve as a central resource of data for all rare diseases.
How CoRDS Work?
A patient registry is an organization program for the collection, storage, retrieval and use of a clearly defined set of data on identifiable individuals for a specified purpose. A patient registry is tool to help establish a natural history study as well as establish prevalence for rare disease.
CoRDS is a patient registry that houses basic contact and clinical information on individuals who have been diagnosed with a rare disease, or who are undiagnosed that enroll. Any researcher with the appropriate approval (IRB approval) can then request de-identified information from the registry that might be helpful to the research they are conducting. By enrolling in CoRDS, patients who qualify will be notified of any opportunities to participate in clinical trials and other research opportunities.