COVID-19 & ITP
ASH Resource - COVID-19 & ITP: Frequently Asked Questions
AJH Commentary: Thrombocytopenia following Pfizer and Moderna SARS-CoV-2 vaccination
COVID-19: How To Recognize and Treat Vaccine-Induced Thrombotic Thrombocytopenia
Since 1998, PDSA has been proud to provide invaluable information for ITP patients and their families, including 24/7 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)
Treatment Guidelines and Professional Practice Consensus
- International Consensus Report on ITP (Updated 2019)
- American Society of Hematology: Clinical Practice Guidelines on Immune Thrombocytopenia (Updated 2019)
- American Society of Hematology Pocket Guides:
Adverse Event Reporting
The process for reporting an adverse treatment event to the U.S. Food and Drug Administration; includes drug safety information.
Expert Opinions in ITP Management
ITP experts explore disease course and treatments in immune thrombocytopenia.
Diagnosis & Clinical Management/Guidelines
- ASH Clinical Practice Guidelines on Immune Thrombocytopenia (ITP)
- Addressing the Management of ITP: An Introduction and Review of the Most Recent Clinical Practice Guidelines for ITP
- 2019 ASH Guideline Update on Treating Relapsed/Refractory ITP
- Adult ITP: When Is It Appropriate to Initiate Therapy?
- Diagnosing ITP
- Immune Thrombocytopenia: A Differential Diagnosis
- Immune Thrombocytopenia Defined
- Immune Thrombocytopenia: Risks and Impact on Patients
- Immune Thrombocytopenia (ITP): Updated Review in 2020
- ITP Pathogenesis, Presentation, and Diagnostic Workup
- Sequencing Therapy in ITP: Current Guidelines
- Serum Complement Levels in Patients With ITP
Bleeding Risks
Pathophysiology
Treatments and Treatment Goals
- Immune Thrombocytopenia looking beyond the platelet count - Presented by Dr Cindy Neunert
- Q&A Discussion on Current ITP Treatments
- Aggressive Treatments for Managing ITP
- Ask the Experts - Alice Ma, MD, Discusses Treating Patients with ITP
- Combination Therapy for Immune Thrombocytopenia Treatment
- Considerations for Treating ITP in the Future
- Corticosteroids vs IVIG for Immune Thrombocytopenia
- Counseling Patients on Goals of Therapy in ITP
- Dr. Altomare on the Management of ITP
- Dr. Altomare on the Challenges of Treating ITP
- First-Line Therapy Options for Patients with ITP
- The Future of ITP Treatment
- How I Treat ITP in 2020: When to Use Corticosteroids/IVIg as 1L Treatment? Is Fostamatinib Efficient and Safe as 2L Therapy?
- Immune Thrombocytopenia (ITP): Advances in Treatment in 2020
- Initial Treatment of Immune Thrombocytopenia
- Initiating Therapy in ITP
- ITP Treatment Landscape in 2020
- ITP Treatment Selection Criteria and Treatment Goals
- Key Insights: Real-World Evidence for ITP Treatment
- Sequencing Therapy in ITP: Current Guidelines
- Treatment of Steroid-Refractory Immune Thrombocytopenia
- Unmet Needs in the Treatment of Immune Thrombocytopenia
Corticosteroids
TPO-RAs
- TPO-Receptor Agonists: Comparisons, Switching, and Tapering Off
- Adult ITP: TPO Receptor Agonists
- Choosing New Agents for ITP
- The Future of Eltrombopag in HIV-Related Thrombocytopenia
- Glucocorticoids Promote Response to TPO-RA in ITP
- Romiplostim Classification and Mechanism of Action
- Tests to Aid in the Diagnosis of Adult ITP
- TPO-RAs as Immune Thrombocytopenia Treatment
- TPO Duration of Response and Toxicity
- TPO Receptor Agonist Selection and Patient Adherence
- TPO Receptor Agonists in ITP
- TPO Receptor Agonists: Treatment Considerations
- Treatment Guidelines for Relapsed/Refractory ITP
Rituxan
IVIG
Syk Inhibitors (Fostamatinib)
- Highlights of the Patient Experience with Tavalisse
- What Patients and Health Care Providers Should Know About Tavalisse
- The Future of ITP Treatments and Tavalisse
- Immune Thrombocytopenia: SYK Inhibitors and COVID-19
- Dr. Fertrin on the Potential of Fostamatinib in Chronic ITP
- Fostamatinib as Second-Line ITP Therapy
- Potential Role of Syk Inhibitors in ITP
- Syk Inhibition in Adult ITP: The FIT1 and FIT2 Trials
- SYK Inhibitors as Immune Thrombocytopenia Treatment
- SYK Inhibitors to Treat ITP: Clinical Implications
- Targeting Syk in Adult Immune Thrombocytopenic Purpura
- What to Know When Treating ITP With a SYK Inhibitor
Danazol, Dapsone, MMF “later-line” therapies
Platelet Transfusions
Splenectomy
Investigational Treatments
Research Resources
Research is the key to learning more about what causes ITP and determines effective treatments to manage the rare autoimmune bleeding disorder. Useful tools to access on-going research:
Scientific and Medical Conferences and Meetings
Each year, PDSA participates in conferences and meetings worldwide in order to share and obtain the most current and relevant information on ITP for patients and their families. Below is a list of organizations that hold annual or frequent conferences and meetings health care providers may be interested in. For information on when and where these events will be held, please view the organization’s website:
- American Society of Pediatric Hematology/Oncology (ASPHO)
- American Society of Clinical Oncology (ASCO)
- American Society of Hematology (ASH)
- Canadian Organization of Rare Disorders (CORD)
- European Hematology Association (EHA)
- National Organization of Rare Disorders (NORD)
- Platelet Disorder Support Association (PDSA)
- Thrombosis and Hemostasis Summit of North America (THSNA)
PDSA Research: Scientific Posters, Publications, Presentations & Awards
Posters
American Society of Hematology (ASH):
- Anxiety in Adult Patients Living with ITP Stratified across Different Treatment Types and Groups (2020)
- Impact of Therapy Choice on Fatigue in Adults with Immune Thrombocytopenia (2020)
- Tapering Thrombopoietin Receptor Agonists in Primary Immune Thrombocytopenia: Recommendations Based on the RAND/UCLA Modified Delphi Panel Method (2020)
- A Patient’s Perspective on Impact of Immune Thrombocytopenia on Emotional Wellbeing: ITP World Impact Survey (I-WISh) (2020)
- Patients’ Reported Perceptions on Satisfaction with Immune Thrombocytopenia Treatments: Results from the ITP World Impact Survey (I-WISh) (2020)
- Higher Symptom Burden in Patients With Immune Thrombocytopenia Experiencing Fatigue: Results From the ITP World Impact Survey (I-WISh) (2020)
- Patients’ and Physicians’ Perspectives on Treatment in ITP – A Multi-Country Perspective: Results From the ITP World Impact Survey (I-WISh) (2019)
- The Burden of Disease and Impact of Immune Thrombocytopenia on Patients: Results from an ITP Survey (2019)
- Mental Health and Treatment in Patients with Immune Thrombocytopenia (ITP): Data from The Platelet Disorder Support Association (PDSA) Patient Registry (2019)
- Patients with Immune Thrombocytopenia Frequently Experience Severe Fatigue but it is Under-Recognized by Physicians: Results from the ITP World Impact Survey (I-WISh) (2018)
- Results From the ITP World Impact Survey (I-WISh): Patients With Immune Thrombocytopenia Experience Impaired Quality of Life Regarding Daily Activities, Social Interactions, Emotional Well-Being, and Working Lives (I-WISh) (2018)
European Hematology Association (EHA):
- Sleep Health Among Adults with ITP: QoL Data from the PDSA Patient Registry
- A Patient’s Perspective on Impact of Immune Thrombocytopenia on Emotional Wellbeing: ITP World Impact Survey (I-WISh) (2020)
- Higher Symptom Burden in Patients With Immune Thrombocytopenia Experiencing Fatigue: Results From the ITP World Impact Survey (I-WISh) (2020)
- Mental Health And Physical Function In Pediatric Immune Thrombocytopenia (ITP): Quality Of Life Data From The Platelet Disorder Support Association (PDSA) Patient Registry (2020)
- Patients’ Reported Perceptions on Satisfaction With Immune Thrombocytopenia Treatments: Results From the ITP World Impact Survey (I-WISh) (2020)
- Quality of Life and Demographics of Patients with Immune Thrombocytopenia (ITP); Data from the Platelet Disorder Support Association (PDSA) Patient Registry (2019)
National Organization of Rare Disorders (NORD):
- Stonger Together: Community Building and Education During the COVID-19 Pandemic
- Building a Global Rare Disease Coalition: Outcomes from the Establishment of an International ITP Alliance Community (2020)
- Quality of Life and Demographics of Patients with Immune Thrombocytopenia (ITP); Data from The Platelet Disorder Support Association (PDSA) Patient Registry. (2019)
- The ITP Patient Registry: Educating the ITP Community and Providing a Link Between Treatment Options and Quality of Life (2018)
- ITP Poke-R Club: A Clinical Support Program Bringing Comfort and Support to Kids Coping with ITP (2016)
Platelet Disorder Support Association (PDSA):
Publications
2021
- Definition of a critical bleed in patients with immune thrombocytopenia: Communication from the ISTH SSC Subcommittee on Platelet Immunology
- SARS-CoV-2 Vaccination and Immune Thrombocytopenia in de novo and pre-existing ITP patients
- Immune thrombocytopenia: the patient’s perspective
2020
- 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
- Patient advocacy and its importance to laboratory medicine practice: A response from patient advocacy groups
2019
- Mental Health and Treatment in Patients with Immune Thrombocytopenia (ITP); Data from the Platelet Disorder Support Association (PDSA) Patient Registry
- 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
2018
- 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
- Urgent Management of Bleeding in Immune Thrombocytopenia: Towards a Standardized Protocol in the Emergency Department
2010
2008
Presentations
2020
- Facts Over Fear: COVID-19 & ITP (April 2020). PDSA’s Virtual Town Hall Meeting
- Peer Voice: Counting on New Approaches to Improve Outcomes in ITP: Translating Updated Recommendations Into Optimal Patient-Centred Care
2019
- Annual PDSA Conference Videos (May 2019)
- Canadian (PDSA) ITP Regional Meeting (May 2019)
- Externally-Led, Patient-focused Drug Development Meeting (July 2019)
- 3rd Annual Canadian Conference on ITP (October 2019)
2018
Awards
PDSA Medical Advisory Board Research: Scientific Posters & Publications
PDSA’s Medical Advisory Board is comprised of world-renowned hematological experts from leading academic and medical institutions. Here we share a collection of their publications on immune thrombocytopenia (ITP) and other platelet disorders.
Posters
Publications
2021
- Platelet Variability Index: A measure of platelet count fluctuations in patients with immune thrombocytopenia
- Definition of a critical bleed in patients with immune thrombocytopenia: Communication from the ISTH SSC Subcommittee on Platelet Immunology
- T Cell Mediated Autoimmunity in Immune Thrombocytopenia
- Qualitative study to support the content validity of the immune thrombocytopenia (ITP) Life Quality Index (ILQI)
- Performance characteristics of platelet autoantibody testing for the diagnosis of immune thrombocytopenia using strict clinical criteria
- 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
- A Review of Romiplostim Mechanism of Action and Clinical Applicability
- Assessment of thrombotic risk during long-term treatment of immune thrombocytopenia with fostamatinib
- Autoimmune and complement-mediated hematologic condition recrudescence following SARS-CoV-2 vaccination
- The Society for Obstetric Anesthesia and Perinatology Interdisciplinary Consensus Statement on Neuraxial Procedures in Obstetric Patients with Thrombocytopenia
- How I treat primary ITP in adult patients who are unresponsive to or dependent on corticosteroid treatment
- Lessons learned using real-world data to emulate randomized trials-a case study of treatment effectiveness for newly diagnosed immune thrombocytopenia
- Exacerbation of immune thrombocytopenia following COVID-19 vaccination
- Clinical overview and practical considerations for optimizing romiplostim therapy in patients with immune thrombocytopenia
- An update on pediatric immune thrombocytopenia (ITP): Differentiating primary ITP, IPD, and PID
- 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
- Genetic variants in toll-like receptor 4 are associated with lack of steroid-responsiveness in pediatric ITP patients
- Severe, Refractory Immune Thrombocytopenia Occuring after SARS-CoV 2 Vaccine
- Misdiagnosed thrombocytopenia in children and adolescents: analysis of the pediatric and adult registry on chronic ITP
- Bone marrow remodelling supports hematopoiesis in response to immune thrombocytopenia progression
- Romiplostim in children with newly diagnosed or persistent primary immune thrombocytopenia
- Novel insights in medical management of immune thrombocytopenia
- The treatment of immune thrombocytopenia (ITP)—focus on thrombopoietin receptor agonists
- Management of immune thrombocytopenia in pregnancy
- Clinical overview and practical considerations for optimizing romiplostim therapy in patients with immune thrombocytopenia
- How I treat immune thrombocytopenia – a global view
- How I treat primary ITP in adult patients who are unresponsive to or dependent on corticosteroid treatment
- 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
- Misdiagnosed thrombocytopenia in children and adolescents: analysis of the Pediatric and Adult Registry on Chronic ITP
- Quality of life is an important indication for second-line treatment in children with immune thrombocytopenia
- Tapering and Discontinuation of Thrombopoietin Receptor Agonist Therapy in Patients with Immune Thrombocytopenia: Results from a Modified Delphi Panel
- Immune Thrombocytopenia: The Patient’s Perspective
- New Developments in Fetal and Neonatal Alloimmune Thrombocytopenia
2020
- Identification of occult cerebral microbleeds in adults with immune thrombocytopenia
- 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
- An evaluation of avatrombopag for the treatment of thrombocytopenia
- An update on the pathophysiology of immune thrombocytopenia
- Early combination treatment of immune thrombocytopenia: Is this the way?
- Fatigue in children and adolescents with immune thrombocytopenia. British Journal of Haematology
- Fostamatinib is an effective second-line therapy in patients with immune thrombocytopenia
- Genetic variants in toll-like receptor 4 are associated with lack of steroid-responsiveness in pediatric ITP patients
- Identifying and treating refractory ITP: difficulty in diagnosis and role of combination treatment
- 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
- “ITP” is not always immune thrombocytopenia
- Management of major bleeds in patients with immune thrombocytopenia
- Pathogenesis of heparin-induced thrombocytopenia
- Perioperative oral eltrombopag versus intravenous immunoglobin in patients with immune thrombocytopenia: a non-inferiority, multicentre, randomized trial
- Phase 2 multiple-dose study of an FcRn inhibitor, rozanolixizumab, in patients with primary immune thrombocytopenia
- Practical guidance for the management of adults with immune thrombocytopenia during the COVID-19 pandemic
- Preparing patients with immune thrombocytopenia for surgery: what are the options?
- Primary immune thrombocytopenia in US clinical practice: incidence and healthcare burden in first 12 months following diagnosis
- Report of a ‘consensus’ on the lines of therapy for primary immune thrombocytopenia in adults, promoted by the Italian Gruppo di Studio delle Piastrine
- 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
- The Need for Comprehensive Care for Persons with Chronic Immune Thrombocytopenic Purpura
- Thrombocytopenia in pregnancy: Diagnosis and approach to management
- Use of thrombopoietin receptor agonists for immune thrombocytopenia in pregnancy: results from a multicenter study
- Immune thrombocytopenia (ITP): Current limitations in patient management
- Splenectomy for immune thrombocytopenia: the evolution and preservation of treatment
2019
- First-Line Therapy for Immune Thrombocytopenia
- Second-line treatments in children with immune thrombocytopenia: Effect on platelet count and patient-centered outcomes
- Long-term overuse of corticosteroids in the real-world treatment of patients with immune thrombocytopenia in the US Explorys and marketscan databases
- 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
- Long-term treatment with romiplostim and treatment-free platelet responses in children with chronic immune thrombocytopenia
2018
- Emerging Therapies in 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
- Urgent Management of Bleeding in Immune Thrombocytopenia: Towards a Standardized Protocol in the Emergency Department
2017
2016
2015
Patient Education Resources
Communicating the intricacies of ITP to patients can be a challenge. The following resources may be helpful in your clinic:
Health Care Provider (HCP) 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 patient’s 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 materials are downloadable. Or contact PDSA to request your toolkit of resources, including:
- ITP Natural History Study Registry (for HCP’s)
- 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
Or contact us:
PDSA
8751 Brecksville Road, Suite 150, Cleveland, Ohio 44141
Email: pdsa@pdsa.org
(Be sure to include your mailing address)
Note: Many of our free booklets are translated into languages other than English.
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.
Learn More
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