RDCRN Contact Registry

The RDCRN Contact Registry (pronounced: R-D-C-R-N Contact Registry) is a centralized database system designed to collect, store, and manage patient contact information and disease-specific data for the Rare Diseases Clinical Research Network (RDCRN). The term "RDCRN Contact Registry" is derived from the acronym RDCRN, which stands for Rare Diseases Clinical Research Network, and the term "Contact Registry", which refers to a type of patient registry used to collect and manage contact information.

Purpose

The primary purpose of the RDCRN Contact Registry is to facilitate communication between patients, researchers, and clinicians involved in rare disease research. It serves as a vital tool for recruiting participants for clinical trials and studies, disseminating research findings, and promoting collaboration among the RDCRN's various consortia.

Function

The RDCRN Contact Registry operates by collecting basic contact information and disease-specific data from patients or their caregivers. This information is then stored in a secure, centralized database that can be accessed by authorized RDCRN personnel. The registry also allows patients to receive updates about new research studies, clinical trials, and other relevant information.

Related Terms

Rare Diseases Clinical Research Network: A network of research consortia dedicated to improving the availability of rare disease information, treatment, clinical studies, and general awareness through public health initiatives.
Patient Registry: 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 one or more predetermined scientific, clinical, or policy purposes.
Clinical Trials: Research studies performed in people that are aimed at evaluating a medical, surgical, or behavioral intervention.

External links

Medical encyclopedia article on RDCRN Contact Registry
Wikipedia's article - RDCRN Contact Registry

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RDCRN Contact Registry