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:

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

Bleeding Risks

Pathophysiology

General Management Strategies for ITP

Treatment in Adults with ITP

Treatment in Children & Adolescents with ITP

Treatment in Older Patients

Quality of Life

Laboratory research in ITP

Refractory ITP

Initial Treatment of Acute ITP

Corticosteroids

Thrombopoietin Receptor Agonists (TPO-RAs)

Avatrombopag (Doptelet®)

Eltrombopag (Promacta®/Revolade)

Romiplostim (Nplate®)

Rituximab (Rituxan®)

IVIG

Fostamatinib (Syk Inhibitors)

Danazol, Dapsone, MMF “later-line” therapies

Splenectomy

Investigational Treatments

 

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.

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

 

Patient Education Resources

 

PDSA Publications & Presentations

Abstracts & Posters


QoL

2023

The Impact Of Itp-Directed Treatment On Fatigue Among Children And Adolescents With Chronic Itp: Data From The Itp Natural History Study Registry

Nighttime Symptoms Are Associated With Fatigue Among Children And Adolescents With Chronic Itp: Data From The Itp Natural History Study Registry

2021

Sleep Health Among Adults with ITP: QoL Data from the PDSA Patient Registry

2020

Mental Health and Treatment in Patients with Immune Thrombocytopenia (ITP): Data from The Platelet Disorder Support Association (PDSA) Patient Registry

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

A Patient’s Perspective on Impact of Immune Thrombocytopenia on Emotional Wellbeing: ITP World Impact Survey (I-WISh)

Patients’ Reported Perceptions on Satisfaction with Immune Thrombocytopenia Treatments: Results from the ITP World Impact Survey (I-WISh)

Higher Symptom Burden in Patients With Immune Thrombocytopenia Experiencing Fatigue: Results From the ITP World Impact Survey (I-WISh)

2019

Patients’ and Physicians’ Perspectives on Treatment in ITP – A Multi-Country Perspective: Results From the ITP World Impact Survey (I-WISh)

The Burden of Disease and Impact of Immune Thrombocytopenia on Patients: Results from an ITP Survey

Quality of Life and Demographics of Patients with Immune Thrombocytopenia (ITP); Data from the Platelet Disorder Support Association (PDSA) Patient Registry

2018

Patients with Immune Thrombocytopenia Frequently Experience Severe Fatigue but it is Under-Recognized by Physicians: Results from the ITP World Impact Survey (I-WISh)

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)

2000-2017

Impact of Immune Thrombocytopenic Purpura on Healthcare Resource Use and Workplace Productivity


COVID-19

2022

Risks For A Platelet Count Drop: Covid-19 & ITP Data From The Platelet Disorder Support Association (PDSA) Patient Registry

Covid-19 Vaccination In Children And Young Adults With Pre-Existing Immune Thrombocytopenia (ITP): Preliminary Data From The Platelet Disorder Support Association (Pdsa) Patient Registry

Does IVIG Use Reduce The Risk Of Contracting Sars-Cov-2 In Patients With Immune Thrombocytopenia: Data From The Platelet Disorder Support Association (PDSA) Patient Registry

2021

Sars-Cov-2 Vaccination in Patients with Pre-Existing Immune Thrombocytopenia

Do Splenectomized Immune Thrombocytopenia (ITP) Patients Have Increased Risks for Platelet Decreases Following COVID-19 Vaccination?

COVID-19 Vaccination in Adults with Immune Thrombocytopenia (ITP): Data from the Platelet Disorder Support Association (PDSA) Patient Registry

 

Considerations in emergent care

ITP and the Community

2022

Patient Community Building in Rare Diseases: The Invaluable Role of Technology as a Lifeline of Information, Support, and Community through the COVID-19 Pandemic

2021

Stonger Together: Community Building and Education During the COVID-19 Pandemic

2020

Building a Global Rare Disease Coalition: Outcomes from the Establishment of an International ITP Alliance Community

2018

The ITP Patient Registry: Educating the ITP Community and Providing a Link Between Treatment Options and Quality of Life

2000-2017

ITP Poke-R Club: A Clinical Support Program Bringing Comfort and Support to Kids Coping with ITP (2016)

 

Scientific Article Publications

Clinical Management

2020

Tapering Thrombopoietin Receptor Agonists in Primary Immune Thrombocytopenia: Recommendations Based on the RAND/UCLA Modified Delphi Panel Method


QoL

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

2019

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

2000-2017

Impact of ITP on physician visits and workplace productivity

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


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

Definition of a critical bleed in patients with immune thrombocytopenia: Communication from the ISTH SSC Subcommittee on Platelet Immunology


Patient Perspectives/Community/Advocacy

2020

Immune thrombocytopenia: the patient’s perspective

Patient advocacy and its importance to laboratory medicine practice: A response from patient advocacy groups

2018

The ITP Natural History Study Registry: Preliminary Findings on the Immune Thrombocytopenia Patient Experience

Presentations

2022

COVID-19 Vaccination in Children and Young Adults with Pre-Existing Immune Thrombocytopenia (ITP): Preliminary Data from the Platelet Disorder Support Association (PDSA) Patient Registry

Does IVIG Use Reduce the Risk of Contracting Sars-Cov-2 in Patients with Immune Thrombocytopenia: Data from the Platelet Disorder Support Association (PDSA) Patient Registry

2021

COVID-19 Vaccination in Adults with Immune Thrombocytopenia (ITP): Data from The Platelet Disorder Support Association (POSTER PDSA) Patient Registry (2021)  

Do Splenectomized Immune Thrombocytopenia (ITP) Patients Have Increased Risks For Platelet Decreases Following COVID-19 Vaccination?  

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

The ITP Natural History Patient Study Registry: Preliminary Results from the ITP Community; ASH Friday Morning ITP Breakfast Meeting

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.

Clinical Trials

 

 

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:

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.

Learn More


Social Media

Follow PDSA on social media! You can find us on Facebook, X (Twitter), Instagram, and LinkedIn!