1680PA global patient-driven Facebook study in a very rare sarcoma: Health-related quality of life in epithelioid hemangioendothelioma (EHE) patients

ConclusionsFor the first time, we showed that a Facebook patient group enabled HRQoL research in EHE. One third of patients was highly symptomatic and experienced reduced functioning in daily life. Collaboration with patients and the established online PROFILES system facilitated successful recruitment in this ultra-rare sarcoma and offers perspectives for future research.Legal entity responsible for the studyThe authors.FundingHas not received any funding.DisclosureW.T. van der Graaf: Research grant / Funding (institution): Bayer; Research grant / Funding (institution): Novartis. I.M.E. Desar: Research grant / Funding (institution): Novartis. All other authors have declared no conflicts of interest.
Source: Annals of Oncology - Category: Cancer & Oncology Source Type: research