PDSA is dedicated to enhancing the lives of patients with immune thrombocytopenia (ITP) and other platelet disorders through education, advocacy, research and support.
Patient-Centered Research Guidelines
In 2016, PDSA established Patient-Centered Research Guidelines with the goal of funding the most promising research that have the potential to raise an ITP patient’s quality of life by further understanding the pathogenesis and management of primary ITP to support development of 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
Request for Proposals announcement provided by the Platelet Disorder Support Association for funding consideration for the research of Immune Thrombocytopenia.
Research Program: Take Action to Make a Difference
Although more is known about ITP each year and new treatments are becoming available, there are many unanswered questions. The Platelet Disorder Support Association has established a research program to support initiatives that lead to better outcomes for the people we serve.
Contribute to our research program on-line or send a check or credit card number to:
PDSA Research Program
8751 Brecksville Road, Suite 150
Cleveland, Ohio 44141
(All contributions to our research program 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 three weeks away
- Pregnancy or breastfeeding
- Treatment with IVIG within the last two weeks
- Treatment with a thrombopoietin receptor agonist within the last four weeks
- Liver disease, deep vein thrombosis, myocardial infarction, thrombotic stroke or arterial thrombosis in the last 12 months; active malignancy
Principal Investigator: 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; email@example.com)
Survey of Non-Traditional Treatments
In 2001, PDSA worked with James Bussel, M.D. of the Weill Medical Center of Cornell University to develop a survey of non-traditional treatments of ITP. Results were compiled from almost 1,000 participants.
Quality of LIfe
PDSA partnered with the biotechnology company Amgen in 2006 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 ITP on physician visits and workplace productivity
- ISPOR Poster presentation on workplace productivity
PDSA meets with directors of the Food and Drug Administration, National Heart Lung and Blood Institute and the Office of Rare Diseases at the National Institutes of Health, the American Society of Hematology and the European Hematology Association 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.
ITP Natural History Study Registry
The ITP Natural History Study Registry is an international patient-consented registry of individuals with ITP. The registry aims to collect, store and retrieve data on the
natural progression of ITP, enabling collection of data on diagnosis and treatment, management of care, quality of life, clinician reporting, and characterization of the ITP population as a whole.