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APS - Lupus Research & Trials Information


Cognitive Function in Lupus and Primary Antiphospholipid Syndrome Patients over Time

An ongoing, observational investigation of lupus patients designed to identify cognitive dysfunction and factors associated with it. Sponsors: Arthritis Foundation (New York Chapter and National Office), Mary Kirkland Center for Lupus Research, NIAMS. Principal Investigator: Melanie J. Harrison, MD, MS RCRC Co-investigators: Michael D. Lockshin, MD and Doruk Erkan, MD. HSS IRB #: 97054

Rheumatology Clinical Research Center (RCRC)

The RCRC at the Hospital for Special Surgery under the Division of Rheumatology is comprised of rheumatologists with strong interests and expertise in epidemiological, health services, and outcomes research in various rheumatic diseases. The goal of the RCRC is to design and execute scientifically sound clinical studies that are important to clinical rheumatology and the care of patients.

Multiple Autoimmune Disease Genetics Consortium (MADGC)

MADGC is a group of leading genetic researchers who have joined efforts to identify and understand the genes that autoimmune diseases have in common. This research may ultimately give doctors valuable knowledge about the basic causes of autoimmune disease and allow them to better diagnose and treat patients.

LCTC: Lupus Clinical Trials Consortium HSS Clinical Lupus Registry

A clinical registry of systemic lupus erythematosus (SLE) patients that is created by the Department of Rheumatology at HSS for LCTC multicenter clinical lupus studies. Sponsor: Lupus Clinical Trials Consortium. Clinical Director: Doruk Erkan, MD. Center Director: Michael D. Lockshin, MD. HSS co-investigator: Melanie J. Harrison, MD. HSS IRB #: 24023

The Lupus Multiplex Registry and Repository (LMRR)

The Lupus Multiplex Registry and Repository (LMRR) is: A long-term research project operating in conjunction with the Lupus Genetic Studies; Sponsored by the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS, a branch of the National Institutes of Health or NIH); The only research resource of multiplex lupus families in the world that scientists in the USA can apply to use in their own lupus research; A collection of DE-IDENTIFIED materials from families with 2 or more members diagnosed with SLE including: Clinical Data, Serum, Plasma & DNA.

Lupus Research Funding and Grants

For information about lupus disease, including lupus symptoms and lupus treatment, visit the Alliance for Lupus Research. This voluntary health organization is committed to fighting and trying to cure lupus through medical research.

PreventionGenetics

PreventionGenetics performs DNA testing and DNA banking for health care and biomedical research. The mission of PreventionGenetics is to prevent disease and disability through genetic testing. PreventionGenetics is dedicated to the highest standards of genetic Ethical Principles.

APSCORE: National Antiphospholipid Syndrome Collaborative Registry

National registry that collects clinical and laboratory information on patients with antiphospholipid antibodies and/or syndrome. Sponsor: National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) Principal Investigator: Robert Roubey, MD (University of North Carolina at Chapel Hill) HSS Investigators: Michael D. Lockshin, MD and Lisa Sammaritano, MD. HSS Co-investigator: Doruk Erkan, MD. HSS IRB #: 20067

Antiphospholipid Antibody Syndrome (APS)

We know very little about why people develop APS. The goal of this research study is to identify genetic or environmental factors that may increase susceptibility to APS. We are looking for families where an individual has APS and one or more family members also have APS. We are also looking for families where an individual has APS and one or more family members has an autoimmune disease such as lupus, diabetes, rheumatoid arthritis, multiple sclerosis, or similar disorders.

Steroids and Antiphospholipid Syndrome- Related Pregnancy Loss

This study is not yet open for patient recruitment. Verified by Imperial College London September 2005

Rare Thrombotic Diseases Consortium

The Duke Hemostasis & Thrombosis Center is a multidisciplinary program devoted to improving the care of patients with bleeding and clotting disorders through innovative basic and clinical research efforts. The Center was formed in 2001, when it was selected by the Centers for Disease Control & Prevention to be one of eight pilot Hemostasis & Thrombosis Centers in the United States . Leadership of the program includes faculty in Hematology, Maternal-Fetal Medicine, Pediatric Hematology, and Cardiology. Ongoing clinical research trials are investigating the optimal 'dose' of platelets for replacement therapy, the role of inherited hypercoagulable states in intrauterine growth restriction, and therapeutic strategies for patients with end-stage renal disease and recurrent vascular access occlusions.

Longitudinal Study of the Clinical and Haematological Cause of Women With Antiphospholipid Antibodies.

This study is currently recruiting patients. Verified by Imperial College London September 2005

Thrombosis Interest Group of Canada (T.I.G.C)

The Thrombosis Interest Group of Canada consists of a group of 40 specialists in fields related to thrombosis who collaborate to write evidence-based or consensus-based clinical guides on the investigation, management, and diagnosis of thrombotic disorders.

Pilot and Feasibility Study of Modafinil Treatment to Improve Cognitive Efficiency in SLE Patients

This study is being conducted in order to determine if the FDA-approved drug Modafinil can improve cognitive function in patients with systemic lupus erythematosus (SLE). Sponsor: Mary Kirkland Center for Lupus Research. Principal Investigator: Melanie J. Harrison, MD, MS. Co-investigators: Michael D. Lockshin, MD. HSS IRB #: 25085

CRISP (Computer Retrieval of Information on Scientific Projects)

CRISP (Computer Retrieval of Information on Scientific Projects) is a searchable database of federally funded biomedical research projects conducted at universities, hospitals, and other research institutions. Maintained by the Office of Extramural Research at the National Institutes of Health (NIH), CRISP includes projects funded by the NIH as well as the Substance Abuse and Mental Health Services Administration (SAMHSA), Health Resources and Services Administration (HRSA), Food and Drug Administration (FDA), Centers for Disease Control and Prevention (CDC), Agency for Healthcare Research and Quality (AHRQ), and Office of Assistant Secretary of Health (OASH). Currently, 27 projects listed on CRISP involve APS. To read about these studies, click on the link below. In the 'enter search terms' box, enter 'antiphospholipid syndrome' and click the 'and' button below the box. Then click 'Submit Query.'

NIH Launches Clinical Studies Nationwide to Investigate Rare Diseases

$71 Million Effort to Address Neglected Conditions. The National Institutes of Health (NIH) announced today it is launching the first clinical studies of its Rare Diseases Clinical Research Network (RDCRN). More than 20 studies are expected to open in the next few months at about 50 sites across the United States and in several other countries including the United Kingdom, Japan, and Brazil.


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