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Lupus Genetics Studies (LFRR)

The recruitment status of this study is unknown because the information has not been verified recently.
Verified November 2008 by National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS).
Recruitment status was  Recruiting
Sponsor:
Collaborator:
Information provided by:
National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS)
ClinicalTrials.gov Identifier:
NCT00071175
First received: October 14, 2003
Last updated: November 14, 2008
Last verified: November 2008
  Purpose

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.


Condition
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 National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS):

Biospecimen Retention:   Samples With DNA

DNA, sera, plasma, cell lines


Estimated Enrollment: 18000
Study Start Date: October 1995
Estimated Study Completion Date: September 2012
Estimated 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.

  Eligibility

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

Criteria

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 ClinicalTrials.gov identifier: NCT00071175

Contacts
Contact: Recruiters 1-888-655-8787 lupus-recruiters@lupus.omrf.org

Locations
United States, Oklahoma
Oklahoma Medical Research Foundation Recruiting
Oklahoma City, Oklahoma, United States, 73104
Contact: Recruiters    888-655-8787    lupus-recruiters@lupus.omrf.org   
Sponsors and Collaborators
Investigators
Principal Investigator: John B. Harley, MD, PhD Member & Program Head, Arthritis and Immunology Research Program; Oklahoma Medical Research Foundation
  More Information

Additional Information:
Publications:

Responsible Party: John B. Harley, MD, PhD; Principal Investigator, Oklahoma Medical Research Foundation
ClinicalTrials.gov Identifier: NCT00071175     History of Changes
Other Study ID Numbers: NIAMS-103, AI24717, AR42460, AR049084, AR52253, AR62277
Study First Received: October 14, 2003
Last Updated: November 14, 2008
Health Authority: United States: Federal Government

Keywords provided by National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS):
Lupus
Genetics

Additional relevant MeSH terms:
Lupus Erythematosus, Systemic
Autoimmune Diseases
Connective Tissue Diseases
Immune System Diseases

ClinicalTrials.gov processed this record on November 24, 2014