PDSA is dedicated to enhancing the lives of patients with Immune Thrombocytopenia (ITP) and other platelet disorders through education, advocacy, research and support. In 2016, PDSA established Research Guidelines with the goal of funding the most promising research projects to further understand the pathogenesis and management of primary ITP, have the potential to raise the quality of life for ITP patients, and lead to new therapies and a cure. PDSA invites the research community to submit proposals for grants that will help us meet these goals.
Request for Proposals Announcement provided by the Platelet Disorder Support Association for funding consideration for the research of Immune Thrombocytopenia.
Research Fund Donation
There is no cure for ITP. Although more is known about the disease each year and new treatments have recently become available, there are many unanswered questions. The Platelet Disorder Support Association has established a research fund to support initiatives that lead to better outcomes for the people we serve.
You can contribute to our research fund on-line or send a check or credit card number to:
8751 Brecksville Road, Suite 150
Cleveland, Ohio 44141
(All contributions to our research fund are tax deductible.)
Bridging ITP Study
Do you have ITP and need surgery?
You may be eligible for a clinical trial in Canada comparing eltrombopag with intravenous immune globulin (IVIG) before surgery.
- Primary or secondary ITP
- Platelet count below surgical platelet count threshold (50 x109 100 x 109
- 18 years of age or older
- On stable doses of ITP medications
- Surgery date is at least 3 weeks away
- Pregnancy or breastfeeding
- Treatment with IVIG within the last 2 weeks
- Treatment with a thrombopoietin receptor agonist within the last 4 weeks
- Liver disease, deep vein thrombosis, myocardial infarction, thrombotic stroke or arterial thrombosis in the last 12 months; active malignancy
Principal Investigator: Dr. Donald M. Arnold MD MSc (McMaster University, Hamilton, Canada)
- Vancouver – Vancouver General Hospital
- Edmonton – University of Alberta
- London – London Health Sciences Centre
- Toronto – St. Michael’s Hospital
- Toronto – Sunnybrook Hospital
- Ottawa – The Ottawa Hospital, General Campus
- Montreal – Jewish General Hospital
- Montreal – Hopital Maisonneuve-Rosemont
- Hamilton - McMaster Hospital
For more information please contact:
Julie Carruthers, study coordinator (905-525-9140 x22942; firstname.lastname@example.org)
In 2001 PDSA worked with Dr. James Bussel of the Weill Medical Center of Cornell University to develop a survey of non-traditional treatments of ITP. Almost 1,000 people responded. You can view the results HERE.
Quality of LIfe
In 2006 PDSA partnered with Amgen to design and administer a survey assessing the treatment experience and life impact of ITP. This research study led to three journal articles and a poster session at the 2008 meeting of the International Society for Pharmacoeconomics and Outcomes Research (ISPOR).
- Health-related quality of life of immune thrombocytopenic purpura patients: results from a web-based survey.
- Impact of corticosteroid-related symptoms in patients with immune thrombocytopenic purpura: results of a survey of 985 patients.
- Impact of ITPon physician visits and workplace productivity
- ISPOR Poster presentation on workplace productivity
PDSA meets regularly with directors of the National Heart Lung and Blood Institute and the Office of Rare Diseases at the National Institutes of Health and the American Society of Hematology to monitor the research progress on relevant studies and initiatives.
PDSA tracks and lists the latest Clinical Trials on ITP to assure that those who want to participate are aware of these opportunities.