Since 1998, PDSA has been proud to provide invaluable information for ITP patients and their families, including providing constant support to help patients and caregivers cope with the physical and psychological effects of living with ITP. PDSA is also proud to serve the scientific community of researchers and clinicians as a dependable source for the latest ITP protocols, research and therapies being developed worldwide.
The PDSA Connection: Creating better outcomes for persons with Immune Thrombocytopenia (ITP)
Health Care Provider Toolkit
PDSA’s exceptional resources keep practitioners up to date on the latest ITP news, disease guidelines, and treatment developments. We fund research to advance future breakthroughs and our distinguished programs and services improve your patients' understanding and empower them to take control of their condition.
PDSA’s extensive library of free educational materials, including patient booklets, fact sheets, and other resources are downloadable.
Or contact PDSA to request your toolkit of resources, including:
- ITP Natural History Study Registry (for HCPs)
- ITP Natural History Study Registry (for patients)
- ITP News
- Patient Booklets & Fact Sheets
- HCP Brochure
- Patient-Centered Research Guidelines (PDSA)
- Professional Membership Information
- Revised Guidelines for Treatment of ITP
- International Consensus Report on ITP (Updated 2019)
- Voice of the Patient: Immune Thrombocytopenia
Contact us by mail:
PDSA
8751 Brecksville Road, Suite 150
Cleveland, Ohio 44141
Or contact us by Email: pdsa@pdsa.org
Note: Many of our free booklets are translated into languages other than English.
Guidelines & Clinical Management Considerations
Treatment Guidelines and Professional Practice Consensus
- International Consensus Report on ITP (Updated 2019)
- American Society of Hematology:
- American Society of Hematology Pocket Guides:
Bleeding Risks
- Risk stratification and outcomes of intracranial hemorrhage in patients with immune thrombocytopenia under 60 years of age
- Risk factors for skin, mucosal, and organ bleeding in adults with primary ITP: a nationwide study in Japan
- Risk factors and predictors of treatment responses and complications in ITP
Pathophysiology
- An update on the pathophysiology of ITP
- Recent advances in the mechanisms and treatment of ITP
- Pathophysiology of ITP
- Pathogenesis of ITP
General Management Strategies for ITP
- “ITP” is not always immune thrombocytopenia
- Performance characteristics of platelet autoantibody testing for the diagnosis of immune thrombocytopenia using strict clinical criteria
- Recent advances in the mechanisms and treatment of immune thrombocytopenia
- Immune thrombocytopenia
- Novel therapies for immune thrombocytopenia
- Platelet Variability Index: A measure of platelet count fluctuations in patients with immune thrombocytopenia
- Immune Thrombocytopenia in Adults: Modern Approaches to Diagnosis and Treatment
- Immune Thrombocytopenia (ITP): Current Limitations in Patient Management
- International survey on Helicobacter pylori testing in patients with immune thrombocytopenia: Communication of the platelet immunology scientific and standardization committee
- Novel insights in medical management of immune thrombocytopenia
- How I treat immune thrombocytopenia – a global view
- An update on the pathophysiology of immune thrombocytopenia
- The Need for Comprehensive Care for Persons with Chronic Immune Thrombocytopenic Purpura
- Immune thrombocytopenia (ITP): Current limitations in patient management
Treatment in Adults with ITP
- Clinical Updates in Adult Immune Thrombocytopenia
- Primary immune thrombocytopenia in adults: Belgian recommendations for diagnosis and treatment anno 2021 made by Belgian Hematology Society
- Report of a ‘consensus’ on the lines of therapy for primary immune thrombocytopenia in adults, promoted by the Italian Gruppo di Studio delle Piastrine
Treatment in Children & Adolescents with ITP
- An update on pediatric immune thrombocytopenia (ITP): Differentiating primary ITP, IPD, and PID
- Fatigue in children and adolescents with immune thrombocytopenia. British Journal of Haematology
- ITP in Children: Initial Management, Clinical Features and Diagnosis, Management of Chronic Disease
- Misdiagnosed thrombocytopenia in children and adolescents: analysis of the pediatric and adult registry on chronic ITP
- Second-line treatments in children with immune thrombocytopenia: Effect on platelet count and patient-centered outcomes
Treatment in Older Patients
Quality of Life
- Qualitative study to support the content validity of the immune thrombocytopenia (ITP) Life Quality Index (ILQI)
- Psychometric Evaluation of ITP Life Quality Index (ILQI) in a Global Survey of Patients with Immune Thrombocytopenia
- Health-related quality of life in adult primary immune thrombocytopenia
- Results from the ITP World IMPACT Survey (I-WISh): Patients with Immune Thrombocytopenia (ITP) Experience Impaired Quality of Life (QoL) Regarding Daily Activities, Social Interactions, Emotional Well-Being and Working Lives
- The ITP Natural History Study Registry: Preliminary Findings on the Immune Thrombocytopenia Patient Experience
- Immune thrombocytopenia (ITP) World Impact Survey (iWISh): Patient and physician perceptions of diagnosis, signs and symptoms, and treatment
- Immune thrombocytopenia (ITP) World Impact Survey (I-WISh): Impact of ITP on health-related quality of life
- Quality of life is an important indication for second-line treatment in children with immune thrombocytopenia
- Immune Thrombocytopenia: The Patient’s Perspective
- Immune thrombocytopenia (ITP) World Impact Survey (I-WISh): Impact of ITP on health-related quality of life
- Immune thrombocytopenia (ITP) World Impact Survey (iWISh): Patient and physician perceptions of diagnosis, signs and symptoms, and treatment
- I-WISh: A wish list for immune thrombocytopenia quality of life indicators becomes reality
- Physicians' and Patients' Perspectives on Treatments in ITP - a Multi-Country Perspective: Results from the ITP World Impact Survey (I-WISh)
- The Burden of Disease and IMPACT of Immune Thrombocytopenia (ITP) on Patients: Results from an ITP Survey
Laboratory research in ITP
- Platelets in ITP: Victims in Charge of Their Own Fate?
- Autoimmune and complement-mediated hematologic condition recrudescence following SARS-CoV-2 vaccination
- T Cell Mediated Autoimmunity in Immune Thrombocytopenia
- Extensive variability in platelet, bleeding, and QOL outcome measures in adult and pediatric ITP: Communication from the ISTH SSC subcommittee on platelet immunology
- International survey on Helicobacter pylori testing in patients with immune thrombocytopenia: Communication of the platelet immunology scientific and standardization committee
- Platelet autoantibodies in bone marrow of patients with immune thrombocytopenia
- Genetic variants in toll-like receptor 4 are associated with lack of steroid-responsiveness in pediatric ITP patients
- Bone marrow remodelling supports hematopoiesis in response to immune thrombocytopenia progression
Refractory ITP
Initial Treatment of Acute ITP
- Lessons learned using real-world data to emulate randomized trials-a case study of treatment effectiveness for newly diagnosed immune thrombocytopenia
- Primary immune thrombocytopenia in US clinical practice: incidence and healthcare burden in first 12 months following diagnosis
- First-Line Therapy for Immune Thrombocytopenia
- Early combination treatment of immune thrombocytopenia: Is this the way?
Corticosteroids
- How I treat primary ITP in adult patients who are unresponsive to or dependent on corticosteroid treatment
- High-dose dexamethasone compared with prednisone for previously untreated primary immune thrombocytopenia: a systematic review and meta-analysis
- Long-term overuse of corticosteroids in the real-world treatment of patients with immune thrombocytopenia in the US Explorys and marketscan databases
- How I treat primary ITP in adult patients who are unresponsive to or dependent on corticosteroid treatment
Thrombopoietin Receptor Agonists (TPO-RAs)
- Clinical outcomes in eight patients with immune thrombocytopenia each treated with the three approved thrombopoietin receptor agonists
- The treatment of immune thrombocytopenia (ITP)—focus on thrombopoietin receptor agonists
- Tapering and Discontinuation of Thrombopoietin Receptor Agonist Therapy in Patients with Immune Thrombocytopenia: Results from a Modified Delphi Panel
- Tapering Thrombopoietin Receptor Agonists in Primary Immune Thrombocytopenia: Recommendations Based on the RAND/UCLA Modified Delphi Panel Method (2020)
Avatrombopag (Doptelet®)
- The structure, function, and clinical use of the thrombopoietin receptor agonist avatrombopag
- An evaluation of avatrombopag for the treatment of thrombocytopenia
Eltrombopag (Promacta®/Revolade™)
- Iron status influences the response of cord blood megakaryocyte progenitors in eltrombopag in vitro
- Treatment of immune thrombocytopenia with eltrombopag in patients who had and who had not received prior rituximab: post-hoc analysis of the EXTEND study
Romiplostim (Nplate®)
- Long-term treatment with romiplostim and treatment-free platelet responses in children with chronic immune thrombocytopenia
- Romiplostim treatment for children with immune thrombocytopenia: Results of an integrated database of five clinical trials
- Romiplostim in adults with newly diagnosed or persistent immune thrombocytopenia
- Safety and efficacy of self-administered romiplostim in patients with immune thrombocytopenia: Results of an integrated database of five clinical trials
- The role of romiplostim for pediatric patients with immune thrombocytopenia
- Assessment of romiplostim immunogenicity in pediatric patients in clinical trials and in a global post marketing registry
- A Review of Romiplostim Mechanism of Action and Clinical Applicability
- Clinical overview and practical considerations for optimizing romiplostim therapy in patients with immune thrombocytopenia
- Romiplostim in children with newly diagnosed or persistent primary immune thrombocytopenia
Rituximab (Rituxan®)
- Response to rituximab in children and adults with ITP
- Gender and duration of disease differentiate responses to rituximab-dexamethasone therapy in adults with ITP
- Rituximab and three dexamethasone cycles provide responses similar to splenectomy in women and those with ITP less than 2 years duration
IVIG
- Cost-effectiveness of eltrombopag vs intravenous immunoglobulin for the perioperative management of immune thrombocytopenia
- Perioperative oral eltrombopag versus intravenous immunoglobin in patients with immune thrombocytopenia: a non-inferiority, multicentre, randomized trial
Fostamatinib (Syk Inhibitors)
- Assessment of thrombotic risk during long-term treatment of immune thrombocytopenia with fostamatinib
- Fostamatinib is an effective second-line therapy in patients with immune thrombocytopenia
Danazol, Dapsone, MMF “later-line” therapies
Splenectomy
- Splenectomy for immune thrombocytopenia: the evolution and preservation of treatment
- A critical appraisal of the evidence for the role of splenectomy in adults and children with ITP
- Splenectomy for ITP: down but not out
Investigational Treatments
- Phase 2 multiple-dose study of an FcRn inhibitor, rozanolixizumab, in patients with primary immune thrombocytopenia
- All-trans retinoic acid for treating immune thrombocytopenia: a new purpose for an old drug?
Special Management Considerations
Treatment considerations in Pregnancy
Treatment considerations with COVID-19
PDSA has been instrumental in providing resources to ITP patients and their families about how the COVID-19 virus and vaccines may impact them.
For additional information, please visit the COVID-19 page.
- ASH Resource - COVID-19 & ITP: Frequently Asked Questions
- AJH Commentary: Thrombocytopenia following Pfizer and Moderna SARS-CoV-2 vaccination
Let your patients know that we have an ITP Natural History Study Registry where we are actively collecting patient-reported data on experiences with COVID-19 exposure, vaccinations, and boosters.
Treatment in emergent situations
- Definition of a critical bleed in patients with immune thrombocytopenia: Communication from the ISTH SSC Subcommittee on Platelet Immunology
- Management of major bleeds in patients with immune thrombocytopenia
- Urgent Management of Bleeding in Immune Thrombocytopenia: Towards a Standardized Protocol in the Emergency Department
- Preparing patients with immune thrombocytopenia for surgery: what are the options?
- Identification of occult cerebral microbleeds in adults with immune thrombocytopenia
Patient Education Resources
- Genetics & ITP
- Watchful Waiting for Pediatric ITP: What Does That Actually Mean?
- Immune Thrombocytopenia (ITP) in Emergency Medicine Questions & Answers
PDSA Publications & Presentations
Abstracts & Posters
QoL
2023
2021
Sleep Health Among Adults with ITP: QoL Data from the PDSA Patient Registry
2020
Anxiety in Adult Patients Living with ITP Stratified across Different Treatment Types and Groups
Impact of Therapy Choice on Fatigue in Adults with Immune Thrombocytopenia
2019
The Burden of Disease and Impact of Immune Thrombocytopenia on Patients: Results from an ITP Survey
2018
2000-2017
Impact of Immune Thrombocytopenic Purpura on Healthcare Resource Use and Workplace Productivity
COVID-19
2022
2021
Sars-Cov-2 Vaccination in Patients with Pre-Existing Immune Thrombocytopenia
Considerations in emergent care
ITP and the Community
2022
2021
Stonger Together: Community Building and Education During the COVID-19 Pandemic
2020
2018
2000-2017
Scientific Article Publications
Clinical Management
2020
QoL
2020
I-WISh: A wish list for immune thrombocytopenia quality of life indicators becomes reality
2019
2018
2000-2017
Impact of ITP on physician visits and workplace productivity
COVID-19
2022
SARS-Cov-2 Vaccination in Patients with Pre-Existing Immune Thrombocytopenia
2021
SARS-CoV-2 Vaccination and Immune Thrombocytopenia in de novo and pre-existing ITP patients
Special Considerations
2021
Patient Perspectives/Community/Advocacy
2020
Immune thrombocytopenia: the patient’s perspective
2018
Presentations
2022
2021
2020
Anxiety in Adult Patients Living with ITP Stratified across Different Treatment Types and Groups
Impact of Therapy Choice on Fatigue in Adults with Immune Thrombocytopenia
Facts Over Fear: COVID-19 & ITP. PDSA’s Virtual Town Hall Meeting
2018
Awards
National Organization for Rare Diseases (NORD), Abbey S. Meyers Leadership Award 2019
Clinical trials in ITP
PDSA connects health care providers and patients to available clinical trials on a global scale that are actively recruiting participants.
Please visit the link below to see if your patient may qualify for any active clinical trials in your area.
PDSA Grant Programs
Every year, PDSA offers funding opportunities to help support research initiatives that promote a greater understanding of ITP and new therapies that could lead to a better outcome for patients, and possibly a cure for the disorder.
The two grant programs include:
- Barbara and Peter T. Pruitt Jr. ITP Research Award
- James B. Bussel, MD, ITP Young Investigator Award
Visit the above links to learn more about how you, your residents and professional students can qualify to apply.
Professional Membership | Social Media
Professional Membership
PDSA partners with a wide range of medical professionals globally to help provide resources for their ITP patients and families. Professional membership not only strengthens PDSA, but more importantly, supports our ability to provide those who care for ITP patients with invaluable materials to help them manage their disease.
Social Media
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