A registry is a place where data from different patients and family members is collected and then used to try and learn more about the disease. The following registries are related to scleroderma research.
The Scleroderma Family Registry and DNA Repository is a research study established in September 2000, with funding from the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS), a branch of the National Institutes of Health (NIH). The overall objective is to identify the genes that influence scleroderma. Patients diagnosed with Systemic Sclerosis (scleroderma) and normal, non-genetically related healthy controls will be included in the study. Click here to visit the website >>
Established in 2007, the Morphea in Adults and Children (MAC) cohort is the first registry for both children and adults with morphea (localized scleroderma) in the country. The purpose of the registry is to learn more about morphea. Click here to visit the website >>
The P₃F Registry is a confidential database of individuals diagnosed with Pulmonary Fibrosis (and/or their primary supporters/caregivers) who wish to be contacted about participating in research projects as they become available. The Registry operates under the direction of the P₃F team, with Dr. Swigris ultimately responsible for safeguarding its content. The experts in the Data Coordinating Center (DCC) at National Jewish Health (NJH) in Denver, Colorado manage the Registry database and ensure the strictest confidentiality of registrant’s information. Click here to visit the website >>