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APS & Related Diseases Research and Clinical Trials

At this time, the APS Foundation of America does not fund research, however we do plan on doing so in the near future. Please see our donate page for details

The following organizations are currently doing research on APS or related diseases. We encourage anyone who qualifies to participate in these clinical studies. By doing so, you could potentially help APS patients in the future!

 

http://htc.medicine.duke.edu/modules/trials/index.php?id=20%E2%80%9D

Clinical Study 5806: Genetics of antiphospholipid antibody syndrome (APS)

Now Recruiting: 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

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.

Click the above link for more information.

 

Autoimmunity and Inflammation

The mission of Research Division at Hospital for Special Surgery is to attain the highest level of scientific excellence through basic and applied research and education in orthopedics, rheumatology and related scientific disciplines.

The goal is to identify the mechanisms underlying musculoskeletal and autoimmune diseases and to discover and develop effective approaches for prevention, diagnosis and treatment of these disorders.

HSS Currently has a research program on Autoimmunity and Inflammation. For more information, click the link below.

http://www.hss.edu/11547.asp

 

Effectiveness of Bridging Anticoagulation for Surgery (The BRIDGE Study)

Blood thinners, such as warfarin, prevent blood clots from forming, thereby reducing the risk of a stroke or heart attack. When people undergo surgery or certain procedures, they must stop using warfarin to prevent too much bleeding during and after the surgery or procedure. Some doctors prescribe a different blood thinner, one that works more quickly and wears off more quickly, to bridge the gap between starting and stopping warfarin. However, this short-term treatment is expensive, may increase the risk of bleeding, and has not been proven effective. This study will determine whether a bridging blood thinner called dalteparin is helpful or harmful for people with atrial fibrillation who stop taking warfarin in preparation for surgery or a procedure.

For more information you can download this FAQ or click the link below:

http://clinicaltrials.gov/ct2/results?term=NCT00786474

 

Throbmotic Storm (CAPS) Study

Most patients with venous thromboembolism present with either deep vein thrombosis, most commonly affecting the legs, or pulmonary embolism. A subset of these patients may present with a rapidly progressive clinical course that is characterized by multiple, life-threatening thromboembolic events, frequently developing in unusual locations (e.g., dural sinus vein thrombosis or intra-abdominal thrombosis). These patients may be difficult to treat, potentially unresponsive to standard therapeutic protocols, and also may manifest with complex coagulopathies, including disseminated intravascular thrombosis. This phenotype, which has been referred to as 'thrombotic storm', may be associated with an underlying primary hypercoagulable state. It has also been described in patients with antiphospholipid syndrome (referred to as 'catastrophic antiphospholipid syndrome', or catastrophic APS), malignancy, infections, and during pregnancy. Thrombotic storm has also been described in pediatric patients.

The primary purpose of this study is to characterize patients with 'thrombotic storm' syndromes (including patients with the catastrophic APS), track their subsequent clinical course over time, obtain detailed family history information to identify any potentially inherited patterns for thrombotic complications or autoimmune disorders, and identify individual genetic factors that contribute to this rare, but extremely serious manifestation. Participants in the study are asked to provide family history information, answer questions about medical and environmental history, provide demographic information, and provide a blood sample. Participants are also asked to update this information yearly. Travel to the researcher is not required and there is no cost to the participant. In addition, participants are not paid to participate.

Ultimately, we hope that data from this research will lead to improvements in prediction, diagnoses, prevention, and treatment of this serious disorder. For more information about this research or thrombotic storm, please go to www.MIHG.org or patients click here to download the brochure (physicians, click here to download the brochure). You may also contact 305-243-2365 during business hours or toll free 24 hours a day at 1-877-740-7744.

 

http://www.rarediseasesnetwork.org

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.

 

 

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