EHE Global Patient Registry

Your Journey is Important

Because EHE is ultra-rare, every person affected and every shared experience makes a difference in the understanding of EHE. The EHE Global Patient Registry is a natural history study that gives people with EHE a meaningful way to contribute to research by sharing real-world experiences.

If you are living with EHE or are a caregiver for someone who has EHE, joining the Registry is one of the most direct ways to contribute to research. Your lived experience can inform the future of EHE management, moving us closer to better treatments, better quality of life, and better outcomes for people affected.

By joining the Registry, your experiences:

• Help researchers understand how EHE presents differently in people and changes over time
• Describe diagnostic journeys, treatment patterns, and treatment outcomes
• Support future research and clinical trial readiness
• Build knowledge to inform care guidelines and shared treatment decision-making for people with EHE

The Registry aims to better understand diagnostic journeys, disease presentations, treatment patterns and outcomes, and the burden of symptoms over time. By sharing your experience, you directly help researchers and clinicians better understand EHE, identify better treatments, and ultimately improve outcomes.

Who Can Participate?

The Registry is open to people diagnosed with EHE anywhere in the world, including:

• Adults, ages 18 years or older
• People under 18 years old, represented by a parent or guardian
• Deceased persons, included by a representative

Lived Experiences Over Time Make a Difference

Each person’s disease presentation is unique and may change in different ways over time. Disease symptoms, interventions used, and how those interventions worked for each person are important to improve our understanding of EHE. Participants are asked to share updates about their EHE every six months, even if there are no changes. These updates build a rich body of knowledge and research resources that can help to improve how doctors understand and manage EHE in the future.

A Natural History Study of EHE

The EHE Global Patient Registry is a natural history study that documents the course of disease and related health information over time. This is important in EHE, where there are very few people and limited data. By collecting standardized information directly from people affected by EHE, this study will create a clearer picture of the disease, who it affects, and help better understand lived experiences.

For Researchers

The EHE Global Patient Registry was developed as a resource to advance EHE research. Researchers may contact [email protected] to inquire about accessing de-identified Registry data for ethically approved research. To learn more about other available research tools and resources, visit Research Resources.