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.
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Request for Proposals
Request for Proposals announcement provided by the Platelet Disorder Support Association for funding consideration for the research of Immune Thrombocytopenia.
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The Barbara and Peter T. Pruitt Jr. ITP Research Award
Two $20,000 grants awarded annually to investigators conducting innovative ITP patient-centered research, The Barbara and Peter T. Pruitt Jr. ITP Research Award is named in honor of two generous friends and the largest single donors in the history of PDSA: Barbara Pruitt, ITP patient since age four, dedicated volunteer and passionate patient advocate and Peter Pruitt, devoted caregiver and supporter serving as PDSA’s Board Chair for over a decade.
Project Title: Association of Platelet Parameters and Subpopulations Identified by High Dimensional Mass Cytometric Analysis of Platelets with Bleeding Severity in Pediatric patients with Immune Thrombocytopenia
Investigator: A.L. “Larry” Frelinger III, Ph.D.
Institution: Boston Children’s Hospital
Project Title: Development of New Diagnostic Tests to Categorize Different Subtypes of Immune Thrombocytopenia (ITP)
Investigator: Ishac Nazy, Ph.D.
Institution: McMaster University
Project Title: Role of Platelet Glycosylation on Platelet Function and Immune Response in Immune Thrombocytopenia Patients
Investigator: Nora Butta, MD
Institution: Hospital Universitario La-Paz
Project Title: The Role of the Gut Microbiome in the Pathogenesis of ITP
Investigator: Joseph Oved, MD
Institution: The Children’s Hospital of Philadelphia
Project Title: Decision Aid to Support Shared Decision Making in Pediatric Refractory Immune Thrombocytopenia
Investigator: Cindy Neunert, MD, MSCS
Institution: Columbia University Medical Center
Project Title: RNA Expression in Acute and Chronic Immune Thrombocytopenia
Investigator: Taylor Olmsted Kim, MD
Institution: Baylor College of Medicine and Texas Children’s Hospital
Project Title: Emergency Management of Severe Thrombocytopenia and Bleeding in Patients with ITP
Investigators: Siraj Mithoowani, MD, FRCP(C) and Donald Arnold, MD, MSc, FRCP(C)
Institution: McMaster University
The James B. Bussel, MD, ITP Young Investigator Award
The James B. Bussel, MD ITP Young Investigator Award was established in 2017 by the PDSA Board of Directors to honor Dr. Bussel for all that he has done and continues to do to make a difference in the lives of ITP patients, their families, and his contributions to mentoring and advancing the scientific careers of promising clinical investigators.
Fellow PDSA medical advisor Doug Cines, MD, said Dr. Bussel “was a pioneer, not only of research in ITP, but for a generation of trainees who could follow his experience. His career shows that is possible to succeed scientifically and academically as a clinically oriented investigator even in rare diseases like ITP if you are persistent and have a creative mind. There are many young investigators and countless patients with ITP who have not met Jim personally and have no idea how much they owe to his contributions to research and patient care.”
The James B. Bussel, MD, ITP Young Investigator Award is competitively awarded to support excellence in academic ITP research by providing a selected student deemed to be of exceptional promise and a highly meritorious project with a $10,000 scholarship award funded by the Platelet Disorder Support Association.
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.)
Quality of Life
ITP Patient Assessment Questionnaire (ITP-PAQ)
In 2006, PDSA partnered with the biotechnology company Amgen in the development of the Immune Thrombocytopenic Purpura Patient Assessment Questionnaire (ITP-PAQ) because no validated disease-specific measures were available to assess health-related quality of life (HRQoL) in adult subjects with ITP. The ITP-PAQ is a 44-item questionnaire that includes scales for physical health (symptoms, fatigue/sleep, bother, and activity), emotional health (psychological and fear), overall QoL, social activity, women's reproductive health, and work.
Amgen has the exclusive copyright to the ITP-PAQ, but has granted PDSA license to sublease the Questionnaire.
For limited, non-exclusive licenses or more information, contact Brenda Foster @ firstname.lastname@example.org.
- 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
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.
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.
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.