Unmet health-related needs of heritable arrhythmogenic cardiomyopathy carriers in Belgium: The UR-HEART survey study.

ABSTRACT:

Background

The revised European Pharmaceutical Legislation emphasizes research and development for unmet medical needs. While gene therapies for arrhythmogenic cardiomyopathies (ACM) are advancing, insight into patients' lived experiences remains limited.

Objective

This study identifies the unmet health-related needs of ACM carriers to guide policy, research, care, and treatment strategies.

Methods

A cross-sectional survey was conducted among ACM carriers in Belgium using convenience sampling. The Needs Examination, Evaluation, and Dissemination (NEED) framework guided the development of a multilingual (Dutch, French, English) questionnaire assessing health-, health care- and social needs among symptomatic (S) and asymptomatic (A) carriers. Data were collected anonymo

SUBMITTER: Locquet P 

PROVIDER: S-EPMC12675060 | biostudies-literature | 2025 Nov

REPOSITORIES: biostudies-literature