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Clinical Studies
5806: Genetics of antiphospholipid antibody syndrome (APS)
Status: Recruiting
Please Note: The Rare Diseases Clinical Research Network will make every effort to enroll all the patients we can, but we cannot make any guarantees that we will be able to enroll everyone in a particular study who wants to participate.
Why are we doing this study?
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.
How can my family help?
If your family has one or more members with APS or other autoimmune diseases, your family may be able to join our study.
Target Enrollment:
Participants will be recruited for this study using brief diagnostic inclusion criteria for antiphospholipid antibody syndrome. This includes: (1) Persistent presence of an antiphospholipid antibody (aPL), defined as: (a) Elevated anticardiolipin antibody level in the blood, present in medium or high titer, on 2 or more occasions, at least 6 weeks apart; and/or (b) Lupus anticoagulant present in plasma, on 2 or more occasions at least 6 week apart and (2) Presence of clinical symptoms seen in patients with APS.
What does participation involve?
To take part in the study, some or all of your relatives will be asked to do the following things:
- Provide a personal and family history, by answering questions over the phone or in person
- Give researchers permission to review medical records related to APS or another autoimmune disease
- Give a blood sample
Other information:
- Taking part is voluntary
- There is no cost to you
- Travel to the study center is not required
- All information is kept strictly confidential
- Taking part will not affect your regular health care
How to Participate:
In order to participate in a study, you must personally contact the study coordinator of any of the participating institutions by phone or by e-mail. Please use the information below to inquire about participation.
- University Medical Center, Durham NC
Letitia Talbott
Phone: 919-684-6180
E-mail: letitia.talbott@duke.edu - University of North Carolina, Chapel Hill, NC
Pat Cummins, RD, BSN
Phone: 919-966-8350
E-mail: pcummins.med.unc.edu - University of Wisconsin, Madison, WI
Ande Jones
Phone: 608-263-0517
E-mail: anj@medicine.wisc.edu - Indiana Hemophilia & Thrombosis Center, Indianapolis, IN
Brandy Trawinski
Phone: 317-871-0011 ext. 216
E-mail: btrawinski@ihtc.org
You can learn more and even join our contact registry!
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