Lupus Genetics Studies (LFRR)

This study has been completed.
National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS)
National Heart, Lung, and Blood Institute (NHLBI)
Information provided by (Responsible Party):
Oklahoma Medical Research Foundation Identifier:
First received: October 14, 2003
Last updated: October 13, 2015
Last verified: October 2015
The Lupus Genetics Studies and Lupus Family Registry & Repository are working to find the genes that reveal the causes of systemic lupus erythematosus (SLE, or lupus). The study is enrolling families of all ethnic backgrounds from the United States, Canada, Puerto Rico, and the Virgin Islands that have one or more living members diagnosed with SLE.

Systemic Lupus Erythematosus

Study Type: Observational
Study Design: Observational Model: Family-Based
Time Perspective: Retrospective
Official Title: Lupus Genetic Studies; Lupus Family Registry & Repository

Resource links provided by NLM:

Further study details as provided by Oklahoma Medical Research Foundation:

Biospecimen Retention:   Samples With DNA
DNA, sera, plasma, cell lines

Enrollment: 3460
Study Start Date: October 1995
Study Completion Date: November 2013
Primary Completion Date: September 2012 (Final data collection date for primary outcome measure)
Detailed Description:

SLE is an often crippling and potentially fatal autoimmune disease that is nine times more prevalent in women than in men, and four times more likely to affect African American females than Caucasian females. It is suspected that a genetic predisposition along with environmental factors contribute to the clinical manifestation of SLE. The Lupus Genetics Studies consist of several familial SLE studies, including the Lupus Family Registry & Repository (LFRR, formerly known as the Lupus Multiplex Registry & Repository, or LMRR). The Lupus Studies enroll families of all ethnicities with one or more members diagnosed with systemic lupus to determine what genes contribute to the development of the disease.

Additionally, the Lupus Family Registry & Repository is the largest repository of its kind in North America. In addition to the research done on site, the Repository serves as a national resource for scientists interested in conducting research on SLE and families either simplex or multiplex for lupus. Data, serum samples, and DNA samples are available to researchers. By collecting families in which two or more living individuals have been diagnosed with SLE, the study is utilizing the genetic link between the affected family members to discover disease-associated genes.

Records will be requested from the patients' treating physicians to document various lupus symptoms and related problems. One-time blood samples will be collected from the patients as well as from certain family members and an unrelated volunteer. There is no cost to participate and the study pays for sample draws and shipping.


Genders Eligible for Study:   Both
Accepts Healthy Volunteers:   Yes
Sampling Method:   Non-Probability Sample
Study Population
Patients diagnosed with SLE Families with living members diagnosed with SLE

Inclusion Criteria:

  • Families in which one or more living members have been diagnosed with systemic lupus erythematosus
  Contacts and Locations
Choosing to participate in a study is an important personal decision. Talk with your doctor and family members or friends about deciding to join a study. To learn more about this study, you or your doctor may contact the study research staff using the Contacts provided below. For general information, see Learn About Clinical Studies.

Please refer to this study by its identifier: NCT00071175

United States, Oklahoma
Oklahoma Medical Research Foundation
Oklahoma City, Oklahoma, United States, 73104
Sponsors and Collaborators
Oklahoma Medical Research Foundation
National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS)
National Heart, Lung, and Blood Institute (NHLBI)
Principal Investigator: John B. Harley, MD, PhD Member & Program Head, Arthritis and Immunology Research Program; Oklahoma Medical Research Foundation
  More Information

Additional Information:

Responsible Party: Oklahoma Medical Research Foundation Identifier: NCT00071175     History of Changes
Other Study ID Numbers: NIAMS-103, 5P01AR049084-09, AI24717, AR42460, AR049084, AR52253, AR62277
Study First Received: October 14, 2003
Last Updated: October 13, 2015
Health Authority: United States: Federal Government

Keywords provided by Oklahoma Medical Research Foundation:

Additional relevant MeSH terms:
Lupus Erythematosus, Systemic
Autoimmune Diseases
Connective Tissue Diseases
Immune System Diseases processed this record on November 24, 2015