In April, the EHE Foundation began a collaboration with the EORTC (European Organisation for Research and Treatment of Cancer) to support an international study on quality of life in people with rare cancer, including EHE. This study aims to develop a guidance document that can be used in the future to help measure the quality of life in people diagnosed with a rare cancer, like EHE.
Why is this collaboration important? It is important to understand how EHE and treatment(s) affect the quality of life for patients, because not enough is known about this. The knowledge gained in this study will be used in future research to improve patient care.
About study participation:
- The EHE Foundation, as part of its research programming, sought to include approximately 20 patients living with EHE to participate, including patients from the UK and Australia. The EHE Global Patient Registry served as a primary source for identifying candidates for the study.
- People were contacted with information about the study and provided the consent form for signing, if they chose to join.
- Participants agreed to take part in a 1-hour virtual interview/discussion. The Foundation facilitated appointments with the moderator, as participants’ identity was de-identified to the researcher.
Analysis of the responses given during the interviews will occur in the coming months. We look forward to future publications and tools that will assess EHE patients’ quality of life, and ultimately lead to improved treatment outcomes.