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Patient Research Registries
Reviewed February 29, 2012
Currently Supported by NIAMS
- Alopecia Areata
- Juvenile Rheumatoid Arthritis
- Lupus
- Muscular Dystrophy
- Neonatal Lupus
- Rheumatoid Arthritis
Alopecia Areata
National Alopecia Areata Registry
University of Texas M.D. Anderson Cancer Center, Houston, TX
Principal Investigator: Dr. Madeleine Duvic
This registry aims to seek out and classify medical and family history data for patients with alopecia areata. Families with multiple affected members will be especially helpful to further research studies. The project will offer a future central information source where researchers can obtain clinical information and biospecimens including DNA for analyses associated with the disease.
Click here for more information on the Alopecia Areata Registry
Juvenile Rheumatoid Arthritis
Research Registry for Juvenile Rheumatoid Arthritis (JRA)
Children's Hospital Medical Center,Cincinnati, OH
Principal Investigator: Dr. David N. Glass
The primary objective of the Juvenile Rheumatoid Arthritis Registry is the continued support of the registry functions with a focus on collections of JRA families with single or multiple affected sibling pairs, and the development of a related genomics program to identify genes for disease susceptibility. DNA will be obtained and stored on all registry patients and family members. Genome-wide screens will be carried out on these DNA in collaboration with Wake Forest University.
Click here for more information in the Research Registry for Juvenile Rheumatoid Arthritis (JRA)
Lupus
Lupus Family Registry and Repository
Oklahoma Medical Research Foundation, Oklahoma City, OK
Principal Investigator: Dr. John Harley
The objective of this registry is to support a core facility dedicated to the collection and characterization of multiplex lupus pedigrees. Clinical information, genotyping data, and family relationship structure are available from the pedigrees collected. Limited amounts of DNA, plasma, and serum are also available from these pedigrees. Investigators interested in using these data or materials are encouraged to contact the registry.
Click here for more information in the Lupus Family Registry and Repository
Muscular Dystrophy
National Registry for Myotonic Dystrophy and Facioscapulohumeral Dystrophy Patients and Family Members
University of Rochester, Rochester, N.Y.
Principal Investigator: Richard Moxley III, M.D.
This registry aims to seek out and classify patients with clinically diagnosed forms of myotonic dystrophy (DM) and facioscapulohumeral dystrophy (FSHD). The registry will store their medical and family history data. It will serve as a central information source where researchers can obtain data for analysis associated with these diseases.
Neonatal Lupus
Research Registry for Neonatal Lupus
Hospital for Joint Diseases, New York, NY
Principal Investigator: Dr. Jill P. Buyon
Given the rarity of this fetal and neonatal disease, which most commonly involves the heart and skin, a central repository of patient information, sera, and DNA was established. The registry provides material for research on the causes of this disease. It is hoped that the registry will facilitate the development of improved methods of diagnosis, as well as prevention and treatment. Information from the registry forms the basis of family counseling and tracks important data such as recurrence rates in subsequent pregnancies. Investigators interested in obtaining information or patient materials for basic or clinical research are encouraged to submit a brief protocol to the registry.
Click here for more information on the Research Registry for Neonatal Lupus
Rheumatoid Arthritis
Rheumatoid Arthritis in African Americans Registry
University of Alabama at Birmingham
Principal Investigator: Dr. S. Louis Bridges, Jr
This registry, Consortium for the Longitudinal Evaluations of African Americans with Early Rheumatoid Arthritis (CLEAR), aims to collect clinical and x-ray data and DNA to help scientists analyze genetic and nongenetic factors that might predict disease course and outcomes of rheumatoid arthritis in this population. Academic centers in the southeast United States will recruit African Americans patients with rheumatoid arthritis to join the registry.
Genetics of Rheumatoid Arthritis Registry
North Shore University Hospital, Manhasset, NY
Principal Investigator: Dr. Peter K. Gregersen
This is a national registry and repository dedicated to the collection and characterization of sibling pairs with Rheumatoid Arthritis (RA). The underlying scientific goal is to search for genes which predispose to rheumatoid arthritis with the ultimate goal of understanding the cause of this disease, leading to better diagnosis and treatments.
Click here for more information on the Genetics of Rheumatoid Arthritis Registry
