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

• Carmen Martín-Gómez ,

  Roles Conceptualization, Methodology, Project administration, Resources, Supervision, Writing – original draft, Writing – review & editing

  * E-mail: carmen.martin.gomez@juntadeandalucia.es

  Affiliations Health Technology Assessment Area-AETSA, Andalusian Public Foundation for Progress and Health (“Fundación Progreso y Salud”–“FPS”), Seville, Spain, Research Group HUM604: Lifestyle Development in the Life Cycle and Health Promotion, University of Huelva, Huelva, Spain

  https://orcid.org/0000-0003-0748-2762

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• Juan Dario Ortigoza-Escobar,

  Roles Resources, Writing – original draft, Writing – review & editing

  Affiliations Department of Child Neurology, Movement Disorders Unit, Institut de Recerca Sant Joan de Déu, Barcelona, Spain, U-703 Centre for Biomedical Research on Rare Diseases (CIBER-ER), Instituto de Salud Carlos III, Barcelona, Spain, European Reference Network for Rare Neurological Diseases (ERN-RND), Tübingen, Germany

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• Laia Nou-Fontanet,

  Roles Resources, Writing – review & editing

  Affiliation Department of Paediatric Neurology, Hospital Sant Joan de Déu, Barcelona, Spain

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• Juan M. Molina-Linde,

  Roles Resources, Writing – review & editing

  Affiliation Health Technology Assessment Area-AETSA, Andalusian Public Foundation for Progress and Health (“Fundación Progreso y Salud”–“FPS”), Seville, Spain

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• Anne-Catherine Bachoud-Lévi,

  Roles Resources, Writing – review & editing

  Affiliations European Reference Network for Rare Neurological Diseases (ERN-RND), Tübingen, Germany, Assistance Publique-Hôpitaux de Paris, Henri Mondor Hospital, National Center of Reference for Huntington’s Disease, Créteil, France, Département d’Etudes Cognitives, École Normale Supérieure, PSL University, Paris, France

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• Juliane Léger,

  Roles Resources, Writing – review & editing

  Affiliations University Paris Est Creteil, INSERM U955, Institut Mondor de Recherche Biomédicale, Equipe NeuroPsychologie Interventionnelle, Creteil, France, Endocrinology-Diabetology Department, Assistance Publique-Hôpitaux de Paris, Robert Debré University Hospital, Reference Center for Growth and Development Endocrine Diseases, Paris, France, Université Paris Cité, NeuroDiderot, Institut National de la Santé et de la Recherche Médicale (INSERM 1141), Paris, France, European Reference Network on Rare Endocrine Conditions (Endo-ERN), Amsterdam, The Netherlands

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• Juan Antonio Blasco-Amaro,

  Roles Project administration, Supervision, Writing – review & editing

  Affiliation Health Technology Assessment Area-AETSA, Andalusian Public Foundation for Progress and Health (“Fundación Progreso y Salud”–“FPS”), Seville, Spain

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• NKX2-1-Related Disorders Guideline Working Group

  ¶Membership of the NKX2-1-Related Disorders Guideline Working Group is provided in the Acknowledgments.

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