HCP Resources

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.

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:
  • Management of Immune Thrombocytopenia (ITP) (Updated 2019)
  • Heparin-Induced Thrombocytopenia (HIT)
  • Thrombocytopenia in Pregnancy

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

  • 2019 ASH Guideline Update on Treating Relapsed/Refractory ITP
  • Adult ITP: When Is It Appropriate to Initiate Therapy?
  • Diagnosing ITP
  • ITP Pathogenesis, Presentation, and Diagnostic Workup
  • Serum Complement Levels in Patients With ITP

• Bleeding Risks

  • Risks of Bleeding and Thrombosis in Adult ITP
  • What is the correlation between symptoms and platelet counts?

• Pathophysiology

  • Understanding the Pathophysiology of ITP
  • Adult ITP Causes and Pathophysiology
  • ITP Pathogenesis, Presentation, and Diagnostic Workup

• Treatments and Treatment Goals

  • Aggressive Treatments for Managing ITP
  • Counseling Patients on Goals of Therapy in ITP
  • Considerations for Treating ITP in the Future
  • First-Line Therapy Options for Patients with ITP
  • The Future of ITP Treatment
  • Initiating Therapy in ITP
  • ITP Treatment Landscape in 2020
  • ITP Treatment Selection Criteria and Treatment Goals
  • Dr. Altomare on the Management of ITP
  • Dr. Altomare on the Challenges of Treating ITP
  • Treatment of Steroid-Refractory Immune Thrombocytopenia
  • Key Insights: Real-World Evidence for ITP Treatment  

• Corticosteroids

  • Clinical Management of Corticosteroids in ITP
  • Upfront Use of Corticosteroids in ITP
  • Frontline Corticosteroid Strategies in Adult ITP
  • Glucocorticoids Promote Response to TPO-RA in ITP

• TPO-RAs

  • Adult ITP: TPO Receptor Agonists
  • The Future of Eltrombopag in HIV-Related Thrombocytopenia
  • Glucocorticoids Promote Response to TPO-RA in ITP
  • Choosing New Agents for ITP
  • Romiplostim Classification and Mechanism of Action
  • TPO Duration of Response and Toxicity
  • TPO Receptor Agonist Selection and Patient Adherence
  • TPO Receptor Agonists in ITP
  • TPO Receptor Agonists: Treatment Considerations
  • Tests to Aid in the Diagnosis of Adult ITP
  • Treatment Guidelines for Relapsed/Refractory ITP

• Rituxan

  • Immunosuppressive Therapy in ITP
  • Rituximab or Platelet Transfusion in ITP

• Syk Inhibitors (Fostamatinib)

  • Potential Role of Syk Inhibitors in ITP
  • Dr. Fertrin on the Potential of Fostamatinib in Chronic ITP
  • Fostamatinib as Second-Line ITP Therapy
  • Syk Inhibition in Adult ITP: The FIT1 and FIT2 Trials
  • Targeting Syk in Adult Immune Thrombocytopenic Purpura

• Danazol, Dapsone, MMF “later-line” therapies

  • Later-Line Treatment Options in Adult ITP

• Platelet Transfusions

  • Rituximab or Platelet Transfusion in ITP

• Splenectomy

  • Splenectomy vs. Other Therapy in ITP
  • Second-Line Treatment Options for Patients with ITP
  • Should splenectomized patients take antibiotics prophylactically?

• Investigational Treatments

  Neonatal FcRn Antibodies:

  • Dr. Altomare on Investigational Agents in ITP
  • Rozanolixizumab to Treat Immune Thrombocytopenia
  • ASH Highlights: Efgartigimod Safe and Effective in Treating Immune Thrombocytopenia (ITP)

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:

• AHRQ: Agency for Healthcare and Research and Quality
• Clinical Trials – NIH National Library of Medicine
• Clinical Trials – Center Watch
• PDSA Patient-Centered Research
• The ITP Natural History Study Registry
• The National Institutes of Health Research Portfolio Online Reporting Tools (RePORT)

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 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):

  • 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)
  • Physicians’ and Patients’ Perspectives on Treatments in ITP – a Multi-Country Perspective: Results from the ITP World Impact Survey (I-WISh) (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):

  • 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):

  • 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)

  Platelet Disorder Support Association (PDSA):

  • ITP Poke-R Club: A Clinical Support Program Bringing Comfort and Support to Kids Coping with ITP (2016)
  • Impact of Immune Thrombocytopenic Purpura on Healthcare Resource Use and Workplace Productivity (2005)

• Publications

  • Patient advocacy and its importance to laboratory medicine practice: A response from patient advocacy groups
  • 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 (2010)
  • 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)
  • Platelet and immune characteristics of immune thrombocytopaenia patients non-responsive to therapy reveal severe immune dysregulation
  • 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 Burden of Disease and IMPACT of Immune Thrombocytopenia (ITP) on Patients: Results from an ITP Survey
  • 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

• Presentations

  2018

  • The ITP Natural History Patient Study Registry: Preliminary Results from the ITP Community (December 2018); ASH Friday Morning ITP Breakfast Meeting

  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)

  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

• Awards

  • National Organization for Rare Diseases (NORD), Abbey S. Meyers Leadership Award 2019

Patient Education Resources

Communicating the intricacies of ITP to patients can be a challenge. The following resources may be helpful in your clinic:

• Inherited Thrombocytopenia
• ITP in Families
• Watchful Waiting for Pediatric ITP: What Does That Actually Mean?
• Immune Thrombocytopenia (ITP) in Emergency Medicine Questions & Answers

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
• Patient-Centered Research Guidelines (PDSA)
• Professional Membership Information
• Revised Guidelines for Treatment of ITP
• International Consensus Report on ITP (Updated 2019)

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.
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