Patient Research Registries

Updated December 11, 2015


Alopecia Areata

National Alopecia Areata Registry

The purpose of the registry is to collect patient information and blood samples from people with alopecia areata.

The registry is enrolling patients.
Researchers may request use of registry information.
The last year of contract funding from NIAMS to develop the registry was 2008.


Juvenile Idiopathic Arthritis

Research Registry for Juvenile Idiopathic Arthritis (JIA)

The purpose of the registry is to collect patient information on families with single or multiple affected sibling pairs. DNA will be obtained and stored on all registry patients and family members.

Researchers may request use of registry information.
The last year of contract funding from NIAMS to develop the registry was 2009.

Contact:
Susan D. Thompson, Ph.D.
Cincinnati Children’s Hospital Medical Center
Phone: 513-636-3899
Email: susan.thompson@cchmc.org


Lupus

Lupus Family Registry and Repository External Web Site Policy

The purpose of the registry is to collect patient information on families with two or more members diagnosed with Systemic Lupus Erythematosus (SLE). The registry will collect clinical data, serum, plasma, and DNA.

The registry is enrolling patients.
Researchers may request use of registry information.
The last year of contract funding from NIAMS to develop the registry was 2007. NIAMS now contributes to the registry through a Program grant (P30AR053483).


Muscular Dystrophy

National Registry for Myotonic Dystrophy and Facioscapulohumeral Dystrophy Patients and Family Members

The purpose of the registry is to connect people with myotonic dystrophy (DM) and facioscapulohumeral dystrophy (FSHD) with researchers studying these diseases. The registry will offer individuals with DM and FSHD an opportunity to participate in research that focuses on their diseases.

The registry is enrolling patients.
Researchers may request use of registry information.
The last year of contract funding from NIAMS to develop the registry was 2009.


Neonatal Lupus

Research Registry for Neonatal Lupus

The purpose of the registry is to collect information on women and infants affected by neonatal lupus as well as other family members who may be healthy.

The registry is enrolling patients.
Researchers may request use of registry information.
The last year of contract funding from NIAMS to develop the registry was 2009.


Rheumatoid Arthritis

Rheumatoid Arthritis in African Americans Registry External Web Site Policy

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.

The registry is enrolling patients.
Researchers may request use of registry information.
The last year of contract funding from NIAMS to develop the registry was 2009.