NIH News Release--New Registry Will Benefit Patients with Antiphospholipid Synd

[Guest guest]

FOR IMMEDIATE RELEASE

Thursday, April 19, 2001 Contact: Judith Wortman

Office of Communications and Public Liaison

(301) 496-8190 wortmanj@...

New Registry Will Benefit Patients with Antiphospholipid Syndrome (APS)

Patients with antiphospholipid syndrome (APS) will benefit from a new national

registry and tissue repository sponsored by the National Institute of Arthritis

and Musculoskeletal and Skin Diseases (NIAMS) and the National Center on

Minority Health and Health Disparities (NCMHD). The coordinating center will

reside at the University of North Carolina, Chapel Hill (UNC).

APS is an autoimmune disorder in which the body appears to recognize certain

phospholipids (fatty molecules that are important components of a cell's

membrane) as foreign substances and produces antibodies against them. People

with APS may experience blood clots leading to heart attack, stroke or loss of

the fetus during pregnancy. APS may occur in patients with lupus and related

autoimmune diseases or as a primary syndrome in otherwise healthy individuals.

Biomedical researchers at eight medical centers will collect and update

clinical, demographic and laboratory information from patients with APS and make

it available to researchers and to medical practitioners concerned with the

diagnosis and treatment of this syndrome. According to I. Katz, M.D.,

Ph.D., NIAMS director, " The availability of this information will permit better

comparisons among clinical research projects and help rheumatologists,

obstetricians and other physicians resolve problems associated with the many

manifestations of the syndrome. "

In APS, blood clots may affect any part of the body. In addition to stroke and

heart attack, abnormalities of the heart valves, kidney disease,

thrombocytopenia (a low level of platelets in the blood) and leg ulcers have

been associated with the disorder. APS takes a particular toll during pregnancy,

when the syndrome may cause miscarriage, stillbirth, retarded growth of the

fetus or pre-eclampsia (toxemia and high blood pressure). In the general

population, APS may account for 20 percent of deep vein thrombosis cases,

one-third of strokes in people under age 50, and 5 to 15 percent of recurrent

miscarriages.

Antiphospholipid antibodies are present in the blood of about one-third of

patients who have lupus; approximately one-third of those with antibodies (10 to

15 percent of all lupus patients) have clinical signs of the syndrome.

Antiphospholipid antibodies have also been identified in people who do not have

an autoimmune disorder like lupus and who may not have any symptoms. Registry

scientists will collect data on patients with clinical signs of APS and on

asymptomatic individuals who have antibodies but have not yet developed any

clinical signs.

The registry/repository is expected to begin operating in late spring. About

2,000 patients will be enrolled over the next five years at UNC and the

following seven centers:

a.. Hospital for Special Surgery, Weill-Cornell University Medical Center in

New York City;

b.. s Hopkins University Medical Center in Baltimore, Md.;

c.. Duke University Medical Center in Durham, N.C.;

d.. Morehouse School of Medicine in Atlanta, Ga.;

e.. Ball Memorial Hospital/Indiana University in Muncie;

f.. University of Texas Health Science Center at San ; and

g.. University of Utah Health Sciences Center in Salt Lake City.

For additional information or to be placed on a list of people to be notified

when registry enrollment begins, contact:

A. S. Roubey, M.D.

Associate Professor of Medicine

Division of Rheumatology and Immunology, CB #7280

Thurston Building, Room 3330

University of North Carolina

Chapel Hill, NC 27599-7280

(919) 966-0572 (registry phone)

apscore@...

http://www.nih.gov/news/pr/apr2001/niams-19.htm