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

• Published in: PloS one Vol. 18; no. 2; p. e0281573
• Main Authors: Martín-Gómez, Carmen, Ortigoza-Escobar, Juan Dario, Nou-Fontanet, Laia, Molina-Linde, Juan M, Bachoud-Lévi, Anne-Catherine, Léger, Juliane, Blasco-Amaro, Juan Antonio
• Format: Journal Article
• Language: English
• Published: United States Public Library of Science 09.02.2023; Public Library of Science (PLoS)
• Subjects: Analysis; Biomedical Research; Cancer; Care and treatment; Caregivers; Clinical medicine; Clinical practice guidelines; Consortia; Decision making; Development and progression; Engineering and Technology; Europe; Evaluation; Focus groups; Handbooks; Health technology assessment; Humans; Hypothyroidism; Interviews; Life Sciences; Lung diseases; Medical ethics; Medical research; Medicine and Health Sciences; Medicine, Experimental; Nervous system diseases; Neurological diseases; Patient education; Patient outcomes; Patients; People and Places; Practice guidelines (Medicine); Qualitative analysis; Qualitative Research; Rare diseases; Research and Analysis Methods; Research methodology; Spain; Study Protocol; Technology assessment; Thyroid cancer; Thyroid gland; Thyroid transcription factor 1; Europe; Spain; Germany

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 co...