Patient Registry
A Patient Registry is an organized system that uses observational study methods to collect uniform data (clinical and other) to evaluate specified outcomes for a population defined by a particular disease, condition, or exposure and that serves predetermined scientific, clinical, or policy purpose(s). We at Sara’s Cure have officially initiated our patient registry in January, 2020. NORD (National Organization for Rare Disorders) owns the registry platform. We are also in partnership with NORD establishing a first-ever national history study.
What is a Registry?
Why a Patient Registry Is Important
Clear cell sarcoma currently does not have a patient registry to document the natural history of the disease so that doctors and researchers have a resource to better treat patients and direct research. It is through the patient registry that we will be able to drive progress towards an effective treatment protocol and better patient outcomes.