LFRR Website Definitions

American College of Rheumatology (ACR) - The professional organization of rheumatologists and associated health professionals who share a dedication to healing, preventing disability, and curing the more than 100 types of arthritis and related disabling and sometimes fatal disorders of the joints, muscles, and bones. Members include practicing physicians, research scientists, nurses, physical and occupational therapists, psychologists, and social workers.

Affected (noun) - For this website, an "affected" is a person who has been diagnosed with SLE.

Approved Users, LFRR - National & International scientists and physicians who have submitted a convincing research proposal that has been reviewed and approved by the LFRR (Lupus Family Registry & Repository) Review Board to utilize the materials in the LFRR to help to advance lupus research.

De-Identified Information - Medical information that does not include details that allow either direct or indirect identification of the patient; the personal or demographic information removed to prevent identification includes, but is not limited to, the participant’s name, social security number, address, and phone number.  

Genetic Predisposition - Inheritance of the genes that make a person more likely than others in the general population to develop a particular disease or medical condition.

HIPAA - Health Information Portability & Accountability Act - A series of laws and regulations passed in 1996 to facilitate the transfer of health care data. HIPAA requires that physicians, clinics, hospitals and researchers protect the privacy and security of patients' medical information.

IRB - Institutional Review Board for the Protection of Human Research Subjects- A committee of physicians, laypersons and researchers that reviews an institution's research plans and protocols relating to human subjects to ensure that these plans and protocols are ethical and safe.

Lupus Linkage - Annual Lupus Genetic Studies newsletter that offers study updates and other lupus-related information. It is distributed to study participants, scientists, physicians, lupus support groups and friends of the study.

Multiplex - A term used by the study's researchers to describe a family with 2 or more blood-related SLE affected members.

National Institutes of Health (NIH) - Made up of 27 different Institutes and Centers, the National Institutes of Health is one of the world's foremost medical research centers, and the Federal focal point for medical research in the United States. The NIH is one of eight health agencies of the Public Health Service which, in turn, is part of the U.S. Department of Health and Human Services. http://www.nih.gov

National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) - The NIH branch under which SLE and other autoimmune illnesses (i.e., arthritis) and musculoskeletal (i.e., fibromyalgia) and skin diseases (i.e., psoriasis) are studied; one of the 27 branches of the NIH. Established in 1986.

Oklahoma Medical Research Foundation (OMRF) - go to OMRF.

OMRF Findings - This quarterly magazine of the Oklahoma Medical Research Foundation enjoys a circulation of nearly 70,000 to donors and friends of the OMRF, with an additional 9000 copies distributed throughout the state of Oklahoma.

Rheumatologist - A physician specializing in the treatment of more than 100 types of arthritis and related disabling and sometimes fatal disorders/autoimmune illnesses of the joints, muscles, and bones.

Serology - A group of tests  performed on a person's blood serum. Serum is  the clear fluid that is separate from the blood clot that forms after a blood sample has been left standing.

Simplex - A term used by the study's researchers to designate a family with one SLE affected member.

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Interested in Participating? See what Study Participation involves, email a Recruiter at
or call toll-free (in the USA, Canada, PR, VI) 1-888-655-8787 (1-888-OK-LUPUS)