ARPKD/CHF Patient Registry
The Office of Rare Diseases Research (ORDR) established a Global Rare Diseases Patient Registry and Data Repository (GRDR); this is now called The NIH/NCATS Global Rare Diseases Patient Registry Data Repository/GRDR. The ARPKD/CHF Alliance is honored to be part of this with the ARPKD/CHF Alliance Patient Registry.
The ARPKD/CHF Alliance Patient Registry is specific for our disease understanding and has the ability to work alongside other databases and provide the rare disease community a resource of standardized aggregated de-identified patient information to accelerate understanding and advance therapeutic development. It will help patients, families, researchers, clinicians, and pharmaceutical companies globally learn more about our disease and prepare for participation in future trials and studies. The goal is to improve diagnosis, medical care, and to develop treatments. It is a way to help the researchers help the patients.