Is any research being done on lupus?
Yes, there is a good deal of interest in lupus. Research can be divided into two types: basic or clinical. Much of the lupus research is considered to be basic, where scientists attempt to develop or refine theories (concepts, beliefs, principles) of how the body works and how the immune system functions. Basic research is conducted in the laboratory and generally does not involve the use of human subjects. We are lucky to have animal models of SLE (mice with lupus) so that research into the cause of lupus and better treatments can be investigated more easily.
Clinical research involves the study of humans and how they act or react to certain factors. It includes applying or testing theories and evaluating their usefulness in solving clinical problems.
Each year the American College of Rheumatology publishes a listing of summaries (abstracts) of research projects. In a typical year, there are over hundreds of research abstracts listed that pertain to lupus. The majority of the studies are basic research. Published research studies can be found using the National Library of Medicine's PubMed web site: http://www.ncbi.nlm.nih.gov/PubMed/
Currently, we are aware of many ongoing clinical studies involving people with lupus and their families. A list of studies is available in the Clinical Trials section of this site.
Clinical research can be divided into two broad areas: testing of new therapies and research to expand our understanding of different aspects of lupus.
Where is lupus being researched?
Lupus research is conducted by both public and private organizations, companies, universities and colleges, as well as the federal government; which includes the National Institutes of Health (NIH), the Department of Veterans Affairs (VA), the Centers for Disease Control (CDC), the Food & Drug Administration (FDA), and the Military. The lead NIH institute for research on lupus is the National Institute for Arthritis, Musculoskeletal and Skin diseases. This is commonly referred to as NIAMS, and it is here where much of the federally funded research related to lupus originates.
Where does the NIAMS lupus research take place?
The NIAMS is within the National Institutes of Health in Bethesda, Maryland and research occurs there, as well as at other major medical centers around the country.
In addition to the NIAMS , there are several other institutes involved in lupus research within the National Institutes of Health ( NIH ), including the NIDDK , NIAID , NHLBI , NIEHS , NINDS , NCMHD , and the NIH Clinical Center .
NIAMS Registries for Lupus and Lupus Related Conditions
Lupus Registry and Repository
In early 1996, the NIAMS established the Lupus Registry and Repository to study people with lupus, and their families in order to identify genes that determine susceptibility to the disease. The high prevalence of lupus among relatives of lupus patients suggests a genetic component for the disease. However, genetic studies of lupus to date have been incomplete. The Lupus Registry and Repository is located at the Oklahoma Medical Research Foundation in Oklahoma City, OK.
Dr. John Harley directs this extensive project. He and his associates collect and update clinical, demographic and laboratory data on all patients with lupus and their families for the Lupus Registry. Blood, cells, and DNA from these individuals are stored in the Lupus Repository for genetic testing.
They are seeking lupus patients who have two or more family members who have been diagnosed with the disease. Families who qualify for the study receive a blood sample collection kit, a consent form and a questionnaire. A blood sample is collected and completed materials are sent to Dr. Harley and his associates for evaluation. Patients or physicians interested in participating should contact:
Carisa Cooney, Kurt Downing, Jessica Lombard or a Recruiter
Oklahoma Medical Research Foundation
Lupus Multiplex Registry & Repository
825 NE 13th Street, MS #5
Oklahoma City, OK 73104
1-888-655-8787 (1-888-OK-LUPUS)
or (405) 271-7479
http://omrf.ouhsc.edu/lupus
Neonatal Lupus Registry
Dr. Jill Buyon is the director of the NIAMS/HJD Neonatal Lupus Registry. The Registry includes identifying and diagnostic information on mothers and their affected infants. The purpose of the Registry is to facilitate access to patients by investigators conducting basic, clinical or epidemiological research.
Please contact:
Jill P. Buyon, M.D., Director
or Peg Katholi, Coordinator
NIAMS/HJD Neonatal Lupus Registry
Hospital for Joint Diseases
301 East 17th Street, Room 1606
New York, NY 10003
Tel: (212) 598-6514
Fax: (212) 598-6449
E-mail : Peg.Katholi@med.nyu.edu
Antiphospholipid Syndrome Registry
Robert A.S. Roubey, M.D. at the University of North Carolina, Chapel Hill directs the APS registry scientists who will collect clinical, demographic and laboratory information on patients with clinical signs of APS as well as people who have antibodies but have not yet developed any clinical signs. Data will be made available to researchers and medical practitioners concerned with diagnosis and treatment.
Please contact:
Robert A. S. Roubey, M.D.
University of North Carolina,
Chapel Hill, NC
Tel: 919-966-0572
Email: apscore@med.unc.edu
Fibromyalgia Family Study Registry
Dr. Jane Olson will lead this study of patients in families with at least two FMS-affected individuals. Families are eligible for participation in this study if at least two closely related family members have Fibromyalgia Syndrome (FMS) and if at least one of these has no other major rheumatologic disease. Clinical, demographic, and laboratory data on FMS will be collected. In addition, DNA will be collected so that genetic linkage studies may be performed.
Please contact:
Dr. Jane Olson
Case Western Reserve University
Cleveland, OH
Tel: 216-778-4589
Email: ffs@darwin.cwru.edu
Further information on these and other NIAMS Registries is available at:
http://www.niams.nih.gov/hi/registry/registry.htm
Further information is available from NIAMS at:
http://www.niams.nih.gov/
Public health information is available from the NIAMS Information Clearinghouse by calling:
1-877-22-NIAMS and at: http://www.niams.nih.gov/hi/index.htm
Does the Lupus Foundation of America (LFA) do research?
A primary focus of the LFA is to encourage research related to the causes, treatments, prevention, and cure of lupus. This research program is supported exclusively through donations from the LFA's nationwide network of chapters and support groups, private foundations or corporations, and the concerned public. It is the LFA's hope that its investment in research will produce new information which may directly lead to much larger projects and substantially increased funding from other sources, particularly the National Institutes of Health. For further information, visit: LFA Funded Projects .
How do I find out more about the LFA's Research Grant Program?
The LFA research program is constantly evolving and growing. The LFA Medical-Scientific Advisory Council annually establishes priorities and programatic goals for lupus research. The LFA issues a requests for proposals (RFP) through its website and distributes information to teaching centers, hospitals, educational institutions and researchers across the country. A primary focus of the organization is to encourage research related to the causes, treatments, prevention, and cure of lupus.
Researchers interested in the LFA grants program can contact the LFA National Office and ask to be placed on the RFP mailing list. Information and applications are downloadable from the LFA Research section of this site.
How close are we to a cure?
It is difficult to know. Research on lupus is progressing on many fronts. Through research, we establish new knowledge and a better understanding of how the immune system functions. With this knowledge, scientists will gain valuable clues into why the immune system malfunctions resulting in complications of lupus.
The Lupus Foundation of America has launched a new initiative aimed at bringing down the barriers that have obstructed progress on research into lupus. The Five-Year Research Program seeks to advance biomedical, clinical, epidemiological, behavioral and translational research that will lead to safe and more effective treatments for lupus and a cure for the disease. The program will help accelerate the pace of medical discovery in lupus with a goal of making clinical trails more feasible.
The LFA Five-Year Research Program will help to accelerate the pace of medical discovery in lupus with a goal of making clinical trials more feasible. Our goal is to remove scientific barriers and encourage pharmaceutical and biotechnology companies to make substantive investments to find the cause and cure for lupus. The LFA will facilitate extensive collaborations between the Congress, the NIH, and our nation's leading pharmaceutical and biotechnology companies to achieve the level of focus for lupus research that is required to bring about a good qualify of life for individuals with lupus.
Are there any studies on the use of estrogen in lupus?
A study published in the New England Journal of Medicine shows that women with inactive or stable lupus might be able to use oral contraceptives containing estrogen without triggering significant additional disease activity. This study did not include women at high risk of thrombosis, and the results only apply to women who are at low risk of thrombosis. Women with antiphospholipid antibodies were excluded from the study.
Previously women with lupus often were advised not to use oral contraceptives because administering estrogen in mouse models of lupus sometimes worsened the disease. Oral contraceptives might now be considered for women at low risk of thrombosis. In this study the researchers concluded that oral contraceptives did not increase flares among women with lupus who have stable disease.
The study on oral contraceptives is one of two separate randomized, placebo-controlled studies that comprise the Safety of Estrogens in Lupus Erythematosus, National Assessment (SELENA) Trial. The other study showed no increased risk of severe flares in postmenopausal women on hormone replacement therapy.
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