Ask Dr. Stephan Moll

These questions have been submitted by folks on the mailing list and answered by Dr. Moll, Director of the Thrombophilia Program at the Carolina Cardiovascular Biology Center, Department of Medicine, Division of Hematology-Oncology, UNC Chapel Hill (North Carolina, USA). Why am I doing this?

54. Antiphospholipid Antibodies

Last Updated: 2/15/2004

Q:"I've been diagnosed with anticardiolipin antibody syndrome. I'm also a prothrombin 20210A heterozygote, and have elevated homocysteine levels. Following several clots and a stroke, my local health care providers are interested in getting me seen by folks with more expertise/experience. Can you recommend where we might turn?Is there an anticardiolipin expert here in the US? Is there a center doing research or clinical trials in which I might participate?"

A: Antiphospholipid antibody syndrome can be associated with venous clots, arterial clots, or pregnancy loss. The disorder is complex and often requires special knowledge of the laboratory tests involved (see Q/A 21 and Q/A 49) so that solid clinical recommendations can be given. There is a group of physicians organized in the APSCORE project, that see patients with this syndrome and are involved in various research studies on antiphospholipid antibodies.

The APSCORE registry (ANTIPHOSPHOLIPID SYNDROME REGISTRY) is a U.S.-wide research project that started in late 2001. The goal of the registry is to:

1. prospectively collect clinical and laboratory data on 2000 patients with antiphospholipid antibodies over a 5 year period, and
2. to identify immunological and genetic abnormalities and mechanisms leading to thrombosis, fetal loss, and other clinical manifestations of the syndrome.
3. In addition, the Registry will be a resource for projects aimed at improving methods of diagnosis, and evaluating more effective and safer methods of treatment and prophylaxis.

The registry is a multi-center, multi-specialty, project involving a group of leading U.S. antiphospholipid antibody syndrome investigators (rheumatologists, hematologists, neurologists, and obstetricians) at 8 academic medical centers. The study is funded by the National Institute of Arthritis and Musculosceletal and Skin Diseases.

If you are a patient with antiphospholipid antibody syndrome you can contact one of the 8 participating centers and inquire about participating. These 8 centers also have specialists who frequently see patients with antiphospholipid antibodies. Clinic appointments can be made with most of these specialists. The 8 centers involved are listed below.

APSCORE Directory

1. Ball Memorial Hospital
   Department of Research
   2401 University Avenue
   Muncie, IN47303-3499
   
   Investigators:
   Douglas A. Triplett, MD (Pathology)
   Jeffrey Dlott, MD (Pathology)
   
   Study Coordinator:
   Sherry Simmonds, RN, BSN
   Tel: 765-747-3435
   ssimmonds@chs.cami3.com
   
   
2. Duke University
   Division of Hematology
   DUMC 3422
   Duke University Medical Center
   Durham, NC27710
   
   Investigator:
   Thomas L. Ortel, MD, PhD (Hematology)
   Tel.: 919-684-5350
   
   Study Coordinator:
   Betty Thames, RN
   Tel: 919-660-7050
   thame001@mc.duke.edu
   
   
3. Hospital for Special Surgery / Weill-Cornell University Medical Center
   Division of Rheumatology, Room 777W
   Hospital for Special Surgery
   535 East 70th Street
   New York, NY 10021
   
   Investigators:
   Michael D. Lockshin, MD (Rheumatology)
   Lisa R. Sammaritano, MD (Rheumatology)
   
   Study Coordinator:
   Elizabeth Sedlis
   Tel: 212-774-2808
   SedlisE@hss.edu
   
   
4. Johns Hopkins University
   Dept. Rheumatology
   1830 E. Monument St.,
   Suite 7500
   Baltimore, MD 21205
   
   Investigator:
   Michelle Petri, MD, MPH (Rheumatology)
   
   Study Coordinator:
   Brett Gutterman
   Tel: 410-614-1574
   brettg@jhmi.edu
   
   
5. Morehouse School of Medicine
   APLS Lab Room 334, B8MB
   720 Westview Drive S.W.
   Atlanta, GA 30310-1495
   
   Investigators:
   E. Nigel Harris, MD (Rheumatology)
   Silvia Pierangeli, PhD
   Tel: 404-752-1720
   
   
6. University of North Carolina at Chapel Hill
   APSCORE
   Campus Box #7280
   UNC - CH
   Chapel Hill, NC27599-7280
   
   Investigators:
   Robert Roubey, MD (Rheumatology)
   Tel: 919-966-0578
   
   Stephan Moll, MD (Hematology)
   Tel: 919-966-3311
   
   Study Coordinator:
   Gail Buxton
   Tel: 919-966-0572
   apscore@med.unc.edu
7. University of Texas Health Science Center at San Antonio
   Dept. Medicine/Neurology - Mail Code 7883
   7703 Floyd Curl Drive
   San Antonio, TX 78229-3900
   
   Investigator:
   Robin Brey, MD (Neurology)
   
   Study Coordinators:
   Amy Saklad
   Tel: 210-567-4615
   saklada@uthscsa.edu
   
   Jana Jones
   Tel: 210-567-1439
   Jonesjm0@uthscsa.edu
   
   
8. University of Utah Health Science Center
   APSCORE - UUMC - OB-GYN
   30 N., 1900 E., Room #2C294
   Salt Lake City, UT84132-2209
   
   Investigator:
   D. Ware Branch, MD (Obstetrics)
   
   Study Coordinator:
   Alice Dowling
   Tel: 801-581-6196

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