Immune Thrombocytopenia Resource Page

Ask-the-Experts is a resource for healthcare providers that enables medical professionals to submit a question to the Foundation's Board and Medical Advisory Committee members to receive their opinion on treatment and management of medical conditions. These researchers and educators at the top of their respective fields offer their perspectives on managing ITP in complex cases.

 Contact and Connect:

If you are a healthcare provider and have a question for one of our experts, click here to SUBMIT YOUR QUESTION. All Ask-the-Expert users must first read and agree to the conditions of Terms of Service.  

*Please note that our experts are unable to provide advice for specific patients and are only available to answer questions from their colleagues.  

FWGBD has collected the best-in-class resources to guide providers in their diagnosis, treatment, and management of patients with ITP. The resources, gathered with input from clinical experts, is intended to support providers in developing their knowledge base related to this often difficult to manage disease.

Recent research conducted by the American Society of Hematology (ASH) indicates that providers, especially those outside hematology, may have knowledge and practice gaps with regard to appropriate diagnosis of ITP, given there is no specific clinical test to confirm a suspected diagnosis.  In fact, research suggests that one in 7 patients suspected of having primary ITP was misdiagnosed at some point during their disease course; 56.1% had grade 2 bleeding (Arnold, 2017).  Additionally, because the course of the disorder varies dramatically across pediatric and adult populations and may be chronic or idiopathic, the treatment protocols may also vary dramatically. 

ASH recently revised its 2011 evidence-based guidelines for treatment and management of ITP. The 2019 guidelines focus on determining the optimal treatment protocol and second-line agents where necessary, in an effort to avoid treatments that have little evidence of success and may have detrimental side effects that outweigh possible benefits. Realizing that ITP can carry a significant patient burden, the guidelines were developed with a patient-focused lens to help evaluate the impact of various disease management options on quality of life.

To help providers better understand the revisions in these recommendations, FWGBD recently hosted a state-of-the-science webinar on Addressing the Management of ITP: An Introduction and Review of the Most Recent ASH 2019 Clinical Practice Guidelines for ITP. The webinar will review the evidence-based recommendations and guidelines covering the management of ITP. This program was presented by Dr. Terry Gernsheimer and was moderated by Dr. Gowthami Arepally. It took place on August 25, 2020. The production and archiving of this program were made possible in part by an educational grant from Dova Pharmaceuticals.

. 

• 2019 ASH Clinical Guidelines on ITP Treatment and Management The leading evidence-based guidelines for ongoing treatment and management of ITP
• ASH Clinical Guidelines Recommendations by Topic  Divided by topic, ASH offers a good summary of treatment options at various stages of disease progression
• International Consensus Report on ITP  Provider-driven medical summary on the treatment and management of ITP, drawn from physicians worldwide, from Blood Advances (2019)
• New England Journal of Medicine Treatment Guide on ITP  The NEJM has curated a set of resources for providers
• FWGBD's Online Resource Library of ITP Articles  Recent medical journal articles, curated and searchable on FWGBD
• Immune Thrombocytopenia Purpura versus Inherited Thrombocytopenia in Adults Drawn from ASH’s Ask the Hematologist column, this is a good summary of the key differences between ITP and inherited thrombocytopenia
• CDC's NHLBI Immune Thrombocytopenia Resource Center The CDC’s NHLBI collected resources of evergreen information for a good primer for providers

For many patients, current treatments, particularly corticosteroids, are associated with multiple, even severe, side effects that may lead to patients stopping or reducing therapy, despite the overall benefits. Successful treatment of ITP involves open communication and support between providers and patients in order to help patients navigate the burden of managing their disease and enhance their quality of life. The following articles drawn from leading academic journals offer insight from other providers’ research to help inform care of your own patients:

• The Burden of Disease and IMPACT of Immune Thrombocytopenia (ITP) on Patients: Results from an ITP Survey
• Advances in ITP--therapy and quality of life--a patient survey
• First-line therapies for immune thrombocytopenic purpura: re-evaluating the need to treat
• Immune thrombocytopenia: improving quality of life and patient outcomes
• Impact of chronic Immune Thrombocytopenic Purpura (ITP) on health-related quality of life: a conceptual model starting with the patient perspective
• Health-related quality of life in children with newly diagnosed immune thrombocytopenia 

Patients need easy-to-navigate resources to help them get started in understanding this complicated disease. These curated resources are a useful place to help your patients along their ITP management journey.

• Resources for the Newly Diagnosed The Platelet Disorder Society of America (PDSA) has created a useful guide to help support newly diagnosed patients understand and cope with ITP
• Treatment and Management of ITP PDSA’s resources for patients to help navigate their ongoing treatment and management, including discussion points to ask providers
• Inherited Thrombocytopenia Understanding the variety of forms of inherited thrombocytopenia, and the key differences from ITP
• ITP in Families  Genetic, hereditary mutation or autoimmune disorder? Learn about the key differences between the disorders
• Watchful Waiting for Pediatric ITP: What Does That Actually Mean?  ITP in children can look very different than its presentation in adults – learn why and how pediatric ITP manifests itself
• Local Support Groups in Your Community

These COVID-19-related resources have been gathered in an effort to support healthcare providers and are not intended to provide medical advice or to substitute for the judgment of healthcare professionals in the care of their patients.

• ASH Guidelines for Treatment of COVID-19 and ITP ASH has revised its first-line treatment guidelines for ITP patients as a temporary measure in light of COVID-19.
• Global Resources for ITP Patients Infected with COVID-19 The International ITP Alliance has gathered key resources from across its global network of providers to inform the treatment of ITP patients with COVID-19.
• Pediatric ITP and COVID-19: What You Need to Know PDSA is updating this set of resources to track children with ITP and implications for COVID-19.
• NORD Financial Resources for COVID-19 Patients with Rare Diseases NORD has collected financial resources and supports for patients with rare disorders, including ITP, that get COVID-19.