Online resources and databases on completed current, or planned rare disease studies. If you enter the Web sites listed below, you will leave the ORD Web site. Please return to our Web site to find more information on rare diseases, patient support groups, and genetic testing laboratories and clinics.

Study to identify facets of daily life that have been impacted upon by lupus that are not routinely evaluated in studies of quality of life in adults with lupus. Sponsors: Mary Kirkland Center for Lupus Research. Principal Investigator: Melanie J. Harrison, MD, MS. HSS IRB #: 21067

An international multi-center, observational study designed to study whether low-dose aspirin can prevent blood clots in APS patients who have only had miscarriages but no blood clots in other vessels. Sponsors: Bayer Pharmaceuticals, Arthritis Foundation, New York Chapter. Principal Investigator: Doruk Erkan, MD. HSS Co-investigators: Melanie J. Harrison MD, MS, Michael D. Lockshin, MD, Lisa Sammaritano, MD, Margaret Peterson, PhD. HSS IRB #: 20069

In medical research, a clinical trial is an organized study conducted in people with a disease or condition to answer specific questions about a new treatment or a new way of using a known treatment. Each study tries to increase medical knowledge and to find new and better ways to help patients. Besides studying new drugs, clinical trials study new combinations of drugs already used in treatment, new ways of giving treatment, and how changes in lifestyle can help patients or prevent diseases from occurring. Other clinical trials compare the best known standard therapy with a newer therapy to see if one produces more cures and causes fewer side effects than the other.

Study to determine what characteristics of childhood lupus are associated with decreased quality of life. Sponsors: Hospital for Special Surgery, Department of Pediatrics Principal Investigator: Lakshimi Moorthy, MD and Thomas Lehman, MD. Co-investigators: Melanie J. Harrison, MD, MS, Margaret Peterson, PhD.

Study of a novel group educational program for lupus patients to improve their ability to perform everyday tasks that have become difficult due to cognitive dysfunction. Sponsor: Mary Kirkland Center for Lupus Research. Principal Investigator: Melanie J. Harrison, MD, MS. HSS IRB #: 22076

The Rare Diseases Clinical Research Network was created to facilitate collaboration among experts in many different types of rare diseases. Our goal is to contribute to the research and treatment of rare diseases by working together to identify biomarkers for disease risk, disease severity and activity, and clinical outcome, while also encouraging development of new approaches to diagnosis, prevention, and treatment.

ClinicalTrials.gov provides regularly updated information about federally and privately supported clinical research in human volunteers. ClinicalTrials.gov gives you information about a trial's purpose, who may participate, locations, and phone numbers for more details. Before searching, you may want to learn more about clinical trials.

Recognizing that most major medical breakthroughs come from unexpected directions, the LRI fosters and supports only the highest ranked new science to prevent, treat and cure lupus. Millions in private sector funding support more than 50 scientists pursuing basic and clinical research studies at leading medical institutions around the country.

Purpose: Some newborns are born with congenital heart block (CHB), a condition occurring in babies with neonatal lupus. The first part of the study will test the effectiveness of fluorinated steroids, including dexamethasone, in improving the heart function and general health of newborns who have auto-antibody-associated CHB. The second part of this study will use ultrasound and heart monitoring to observe high-risk pregnant women and their fetuses during the third trimester of pregnancy.

The Centers for Disease Control and Prevention supports a network of specialized health-care centers to prevent and reduce complications experienced by persons with certain hereditary blood disorders. Currently, CDC has provided funds to eight "pilot" hemostatis and thrombosis centers to find out how to best provide treatment and preventative care to people with thrombosis or thrombophilia. These centers have multi-disciplinary teams of health-care specialists, state-of-the art clinical research programs, and provide outreach and education programs for patients.

This study is currently recruiting patients. Verified by Hospital for Special Surgery, New York September 2005

Human Genome Sciences, Inc. announced that a Phase 2 clinical trial demonstrated that LymphoStat-B™ (belimumab) significantly reduced disease activity in patients with serologically active systemic lupus erythematosus (SLE), exhibited clinically relevant bioactivity, and was safe and well tolerated. Two oral presentations reported the complete study results today in Amsterdam at the Annual European Congress of Rheumatology (EULAR 2006).

Our goal is to get as many people enrolled in lupus clinical trials as possible, so that the lupus community can finally get some answers on prevention, treatments, and a cure.

One fast click to see the current studies dealing with APS.

The LRI Chicago shares the mission of its lead organization, the Lupus Research Institute, in championing only new science — the truly innovative research that will prevent, treat and cure lupus.

Why is this study being done? The purpose of this study is to determine inherited causes of venous thromboembolism(includes both deep vein thrombosis and pulmonary embolism) by studying families in whom two or more family members have had either deep vein thrombosis or pulmonary embolism.

Lupus, Volume 15, Number 9, September 2006, pp. 577-583(7). Our study shows a protective effect of antimalarials against thrombosis and an increased survival of SLE patients taking these drugs. These data support the routine use of antimalarials in all patients with SLE.

Research will evaluate whether study medication will affect breathing, relax tightness in the muscles, and allow the wrist, fingers, and elbow to be straightened. Study will last for about 32 weeks; if you participate you will be asked to make nine visits to the study center, where you will have injections into your arm and hand. Research site located in Pittsburgh, Penn.

We know very little about what causes antiphospholipid antibody syndrome (APS). Sometimes several family members have APS. Other times, one person has APS and other relatives have a different autoimmune disease like lupus or diabetes. Because APS sometimes runs in families, we think that certain genes may cause APS. The purpose of this study is to find the genes that cause APS.

Welcome to the Stroke Trials Directory, a continuously updated registry of randomized clinical trials. This project is a joint effort of the Internet Stroke Center at Washington University School of Medicine, the American Stroke Association and the National Institute of Neurological Disorders and Stroke. Please visit our frequently asked questions page for more information about this site.

Antiphospholipid antibody syndrome (APS) is a medical problem that is associated with health risks for the pregnant mother and her baby. Initial selection criteria for the study include women between 18 and 44 years of age, diagnosis of antiphospholipid antibody syndrome and able to safely undergo treatment with heparin. Research site located in Chicago, Ill.

REGISTRY OF THE "EUROPEAN FORUM ON ANTIPHOSPHOLIPID ANTIBODIES" FOR PATIENTS WITH THE "CATASTROPHIC" ANTIPHOSPHOLIPID SYNDROME