Exploring the values, preferences, and information needs of patients with NKX2-1-related disorders: A qualitative study protocol.

ABSTRACT:

Background

NKX2-1-related disorders have a prevalence of 1:500,000 and are therefore considered a rare condition according to the European Commission's definition. The European Reference Network of Rare Neurological Disorders is developing the first clinical practice guideline on the management of this condition, with the support of the Andalusian Health Technology Assessment Area, Endo-ERN, ERN-Lung and Imegen, within the framework of the ERNs Guidelines programme (DG SANTE/2018/B3/030). Within the scope of this programme, it becomes necessary to explore the patient perspective in order to include it in the ongoing clinical practice guideline and accompanying patient information booklet.

Methods and analysis

This study will use qualitative methods to explore the values, pre

SUBMITTER: Martin-Gomez C 

PROVIDER: S-EPMC9910649 | biostudies-literature | 2023

REPOSITORIES: biostudies-literature