Health Information
 |
Health Topics |
|
Order Publications |
|
|
 |
Patient Research Registries |
|
Outreach Programs |
|
NIAMS Coalition Members |
Patient Research Registries
Date Revised: January 15, 2004
Currently Supported by NIAMS
Previously Supported by NIAMS
National Alopecia Areata Registry
University of Texas M.D. Anderson Cancer Center, Houston, TX
Principal Investigator: Dr. Madeleine DuvicThis registry aims to seek out and classify medical and family history data for patients with three major forms of alopecia areata: alopecia areata, alopecia totalis, and alopecia universalis. 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 statistical data associated with the disease.
Registry contact: Madeleine Duvic, M.D.
Phone Number: 713-792-5999
Fax Number: 713-794-1491
Email: alopeciaregistry@mdanderson.org
North American Spondylitis Consortium
University of Texas-Houston Health Science Center, Houston, TX
Principal Investigator: Dr. John D. Reveille
The consortium hopes to learn more about genes that play a role in the disease. They plan to collect medical information and genetic material (DNA) from 400 families nationwide in which two or more siblings have AS. Through genetic typing methods, researchers will search for genes that may contribute to predisposition of AS, and they also hope to identify, from newly mapped candidate genes, mutations and their effect on disease severity.
Registry Contact: Spondylitis Association of America Family Genetic Research Project
Phone Number: Toll free (888) 777-1594
National Registry on Antiphospholipid Syndrome
University of North Carolina, Chapel Hill
Principal Investigator: Dr. Robert Roubey
This registry will collect and update clinical, demographic and laboratory information from patients with antiphospholipid syndrome (APS) and make it available to researchers and medical practitioners concerned with diagnosis and treatment. Registry scientists will collect data on patients with clinical signs of APS and on asymptomatic individuals who have antibodies but have not yet developed any clinical signs.
Registry contact: Robert A.S. Roubey, M.D.
Phone number: 919-966-0572
Email: apscore@med.unc.edu
National Epidermolysis Bullosa Registry
c/o Dermatology Associates of Kentucky, Lexington, KY
Principal Investigator: Dr. J. David FineThe National EB Registry collects information from patients with EB, characterizes the many different forms of EB and determines risks of various symptoms associated with the disease. The information is used for research to improve understanding and provide better treatment of EB. The registry also provides initial diagnostic testing of patients.
Registry contact: Jo-David Fine, M.D.
Phone Number: 859-354-4444
Email: ebregistry@daklex.com
Website: www.daklex.com
Fibromyalgia Family Study Registry
Case Western Reserve University, Cleveland, OH
Principal Investigator: Dr. Jane OlsonThis research registry is aimed at the collection of multicase Fibromyalgia Syndrome (FMS) pedigrees. It involves the collection and validation of clinical, demographic, and laboratory data on FMS patients from families with at least two FMS-affected individuals and their family members. DNA is also being collected, stored, and genotyped, so that that genetic linkage studies may be performed. Families are eligible for participation in this study if at least two closely related family members have FMS and if at least one of these has no other major rheumatologic disease.
Registry contact: Dr. Jane Olson
Phone Number: 216-778-4589
Email: ffs@darwin.cwru.edu
National Registry for Ichthyosis and Related Disorders
University of Washington, Seattle, WA
Principal Investigator: Dr. Philip FleckmanThe registry is aimed at searching for basic defects, improving methods of diagnosis, and developing effective methods of treatment and prevention. The registry is actively enrolling affected individuals with ichthyosis (excluding ichthyosis vulgaris), erythrokeratodermas, Darier Disease, Hailey-Hailey Disease, pachyonychia congenita, the palmar-plantar keratodermas, and extensive epidermal nevi. To date, 572 individuals have been enrolled. Serum cholesterol sulfate and fibroblast fatty aldehyde dehydrogenase testing as means of confirming X-linked recessive ichthyosis and Sjogren-Larsson Syndrome, respectively, as well as selected molecular diagnostic tests, are available at no charge where indicated.
Registry contacts: Philip Fleckman, M.D. or Geoff Hamill, R.N.
Phone Number: 1-800-595-1265
Email: ichreg@u.washington.edu
Website: www.skinregistry.org
New Onset Juvenile Dermatomyositis Registry
Children's Memorial Hospital, Chicago, IL
Principal Investigator: Dr. Lauren PachmanThe Research Registry for New Onset Juvenile Dermatomyositis was awarded in September of 1995. The purpose of the Registry is to collect, characterize and make available to the research community cases of newly onset juvenile dermatomyositis (JDMS) and investigate geographic and seasonal clustering of new cases. JDMS is an extremely rare autoimmune diseases of childhood characterized by the development of an abnormal skin rash, inflammation of skeletal muscle and vasculopathy. Constitutional symptoms are common, the cause of the disease is not known and there is no available cure.
Registry contacts: Dr. Lauren Pachman
Phone Number: 1-888-719-8098
FAX Number: 773-880-4179
Email: kabbott@childrensmemorial.org
Research Registry for Juvenile Rheumatoid Arthritis (JRA)
Children's Hospital Medical Center,Cincinnati, OH
Principal Investigator: Dr. David N. Glass
Co-Principal Investigator: Dr. Edward GianniniThe primary objective of the Juvenile Rheumatoid Arthritis Registry is the continued support of the registry function with a focus on multicase families with affected sibling pairs, and the development of a related genomics program to identify all of the genes for 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 conjunction with collaborators from Stanford and Wake Forest Universities.
Registry contact: Edith Shear
Phone Number: 1-800-559-7011
Fax Number: 1-513-636-5990
Lupus Registry and Repository
Oklahoma Medical Research Foundation, Oklahoma City, OK
Principal Investigator: Dr. John HarleyThe objective of this registry is to support a core facility dedicated to the collection and characterization of multiplex lupus pedigrees. Clinical information, genotypes at over 300 loci, and family relationship structure are available from 303 pedigrees containing 1,832 family members. An additional 50 pedigrees are made available each succeeding year. Limited amounts of DNA, plasma, and serum are also available from these pedigrees. Investigators interested in using these data or materials should visit the website and/or contact Dr. Harley (Oklahoma Medical Research Foundation, 825 N.E. 13th Street, Oklahoma City, OK 73104).
Registry contact: John B. Harley, M.D., Ph.D.
Phone Number: 888-655-8787
Fax Number: 405-271-3045
Email: john-harley@omrf.ouhsc.edu
Website: www.omrf.ouhsc.edu/lupus
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.
Registry Contact: Lynn Cos, R.N., C.C.R.C.
Phone Number: 716-275-7680
Fax Number: 212-598-6449
Email: lynn_cos@urmc.rochester.edu
Research Registry for Neonatal Lupus
Hospital for Joint Diseases, New York, NY
Principal Investigator: Dr. Jill P. BuyonGiven 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 basic research on the causes of this disease. It is hoped that the registry will facilitate 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. At the present time there are 247 mothers and their 287 affected children enrolled. The registry welcomes new referrals and expects to continue enrollment until at least September 2004. Investigators interested in obtaining information or patient materials for basic or clinical research are encouraged to submit a brief protocol.
Registry Contacts: Dr. Jill P. Buyon or Peg Katholi
Phone Number: 212-598-6514
Fax Number: 212-598-6449
Email: jbuyonic@aol.com
Rheumatoid Arthritis in African Americans Registry
University of Alabama at Birmingham
Principal Investigator: Dr. Larry MorelandThis 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. Academic centers in the southeast United States will recruit African Americans to join the registry.
Registry contacts:
Jacqueline Wyatt
Phone number: 205-975-8091
Email: jacqueline.wyatt@ccc.uab.edu
or
Selena Luckett
Phone number: 205-934-7427
Email: selena.luckett@ccc.uab.edu
Fax number: 205-975-5554Genetics of Rheumatoid Arthritis Registry
North Shore University Hospital, Manhasset, NY
Principal Investigator: Dr. Peter K. GregersenThis is a national registry and repository dedicated to the collection and characterization of sibling pairs with Rheumatoid Arthritis (RA). The goal of the registry is to collect at least 1,000 families in which two or more siblings are affected with rheumatoid arthritis. 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. Each participant with rheumatoid arthritis is visited by a study coordinator at his or her doctor's office or other location convenient for the participant. An interview and brief physical exam will be performed, and a blood specimen obtained. In addition, a hand Xray will be done if one is not available within the last 2 years. Blood samples will be requested from the parents (if available) of the participating rheumatoid arthritis patients. As of May 2000, over 750 families have agreed to participate in this study. For a family to participate in the study, the following criteria must be met:
Two or more siblings with rheumatoid arthritis in the family
At least one sibling with documented erosions on hand Xrays
At least one sibling with onset of rheumatoid arthritis between the ages of 18 and 60.
Registry contact: Dr. Peter Gregersen
Phone Number: 1-800-382-4827
Email: narac@nshs.edu
Website: www.medicine.ucsf.edu/divisions/rheum/narac
Scleroderma Registry
University of Texas Health Science Center, Houston, TX
Principal Investigator: Dr. Maureen MayesThe aim of the registry is to identify cases of systemic sclerosis; verify all diagnoses; establish a computer database; provide a continuous update of the prevalence, incidence, and mortality rates of scleroderma in this population; and establish prospectively the average annual mortality. A major focus of the registry is to establish a cohort of incident cases for early intervention trials and genetic studies, as well as for basic science and other clinical and epidemiological studies.
Registry Contact: Dr. Maureen D. Mayes
Phone Number: 800-736-6864 or 713-500-7196
Fax Number: 713-500-0723
