Cystic Fibrosis

Development of an Online Scenario-Based Tool to Enable Research Participation and Public Engagement in Cystic Fibrosis Newborn Screening: Mixed Methods Study

Louise Moody, Samantha Clarke, Matt Compton, Rachael Hughson-Gill, Felicity Boardman, Corinna Clark, Pru Holder, James R Bonham, Jane Chudleigh

J Particip Med 2025 (Mar 06); 17:e59686

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Mixed Comparative Evaluation of a Training Program Dedicated to Cystic Fibrosis Reference Centers: Protocol for the Pilot Implementation of Shared Decision-Making in the Treatment of Diabetes in Adult Patients With Cystic Fibrosis

Nora Moumjid, Constance Gotte, Sophie Hommey, Stéphanie Poupon Bourdy, Julie Haesebaert, Isabelle Durieu, Quitterie Reynaud

JMIR Res Protoc 2025 (Jan 28); 14:e62931

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Using Community Engagement to Create a Telecoaching Intervention to Improve Self-Management in Adolescents and Young Adults With Cystic Fibrosis: Qualitative Study

Christina L Duncan, Emily F Muther, Jennifer J Lindwall, Kristine Durkin, Elizabeth Ruvalcaba, Eliza Williamson, Corrine Ahrabi-Nejad, Evelyn Bord, Angela Green, Megan L Harrison, Deepika Polineni

J Particip Med 2025 (Jan 20); 17:e49941

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Home-Based Connected Devices Combined With Statistical Process Control for the Early Detection of Respiratory Exacerbations by Patients With Cystic Fibrosis: Pilot Interventional Study With a Pre-Post Design

Enora Le Roux, Moreno Ursino, Ivana Milovanovic, Paul Picq, Jeremie Haignere, Gilles Rault, Dominique Pougheon Bertrand, Corinne Alberti

JMIR Form Res 2024 (Oct 28); 8:e51753

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Potential, Pitfalls, and Future Directions for Remote Monitoring of Chronic Respiratory Diseases: Multicenter Mixed Methods Study in Routine Cystic Fibrosis Care

Martinus C Oppelaar, Yvette Emond, Michiel A G E Bannier, Monique H E Reijers, Hester van der Vaart, Renske van der Meer, Josje Altenburg, Lennart Conemans, Bart L Rottier, Marianne Nuijsink, Lara S van den Wijngaart, Peter J F M Merkus, Maud Heinen, Jolt Roukema

J Med Internet Res 2024 (Aug 06); 26:e54942

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A Patient-Driven Mobile Health Innovation in Cystic Fibrosis Care: Comparative Cross-Case Study

Pamela Mazzocato, Jamie Linnea Luckhaus, Moa Malmqvist Castillo, Johan Burnett, Andreas Hager, Gabriela Oates, Carolina Wannheden, Carl Savage

J Med Internet Res 2024 (Jul 31); 26:e50527

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Development of a Web App to Enhance Physical Activity in People With Cystic Fibrosis: Co-Design and Acceptability Evaluation by Patients and Health Professionals

Raphaelle Ladune, Meggy Hayotte, Anne Vuillemin, Fabienne d'Arripe-Longueville

JMIR Form Res 2024 (Jul 30); 8:e54322

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Revolutionizing Care: Unleashing the Potential of Digital Health Technology in Physiotherapy Management for People With Cystic Fibrosis

Lisa Morrison, Zoe Louise Saynor, Alison Kirk, Lisa McCann

JMIR Rehabil Assist Technol 2024 (Jul 15); 11:e55718

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Experiences Among Patients With Cystic Fibrosis in the MucoExocet Study of Using Connected Devices for the Management of Pulmonary Exacerbations: Grounded Theory Qualitative Research

Maxime Morsa, Amélie Perrin, Valérie David, Gilles Rault, Enora Le Roux, Corinne Alberti, Rémi Gagnayre, Dominique Pougheon Bertrand

JMIR Form Res 2024 (Jan 23); 8:e38064

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Author Reply to: Empowering Without Misinforming Adolescents and Young Adults with Cystic Fibrosis. Comment on “Perceptions of Social Media Use to Augment Health Care Among Adolescents and Young Adults With Cystic Fibrosis: Survey Study”

Ryan C Perkins, Gregory S Sawicki

JMIR Pediatr Parent 2022 (May 25); 5(2):e39450

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Empowering Without Misinforming Adolescents and Young Adults with Cystic Fibrosis. Comment on “Perceptions of Social Media Use to Augment Health Care Among Adolescents and Young Adults With Cystic Fibrosis: Survey Study”

Navandeep Thumber, Prerana Bhandari

JMIR Pediatr Parent 2022 (May 25); 5(2):e33457

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Use of Home-Based Connected Devices in Patients With Cystic Fibrosis for the Early Detection and Treatment of Pulmonary Exacerbations: Protocol for a Qualitative Study

Maxime Morsa, Amélie Perrin, Valérie David, Gilles Rault, Enora Le Roux, Corinne Alberti, Rémi Gagnayre, Dominique Pougheon Bertrand

JMIR Res Protoc 2021 (Aug 18); 10(8):e14552

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Perceptions of Social Media Use to Augment Health Care Among Adolescents and Young Adults With Cystic Fibrosis: Survey Study

Ryan C Perkins, Rachel Gross, Kayla Regan, Lara Bishay, Gregory S Sawicki

JMIR Pediatr Parent 2021 (Aug 16); 4(3):e25014

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Developing a Decision Aid to Facilitate Informed Decision Making About Invasive Mechanical Ventilation and Lung Transplantation Among Adults With Cystic Fibrosis: Usability Testing

Katherine L Dauber-Decker, Melissa Basile, D'Arcy King, Jennifer Polo, Karina Calise, Sundas Khan, Jeffrey Solomon, Daniel Dunne, Negin Hajizadeh

JMIR Hum Factors 2021 (Apr 14); 8(2):e21270

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A Mobile Health Platform for Self-Management of Pediatric Cystic Fibrosis: Qualitative Study of Adaptation to Stakeholder Needs and Integration in Clinical Settings

Sarah B Rutland, Rikard Palmer Bergquist, Andreas Hager, Robin Geurs, Cathy Mims, Hector H Gutierrez, Gabriela R Oates

JMIR Form Res 2021 (Jan 26); 5(1):e19413

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Identifying Principles for the Construction of an Ontology-Based Knowledge Base: A Case Study Approach

Xia Jing, Nicholas R Hardiker, Stephen Kay, Yongsheng Gao

JMIR Med Inform 2018 (Dec 21); 6(4):e52

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Clinical Adoption of mHealth Technology to Support Pediatric Cystic Fibrosis Care in Sweden: Qualitative Case Study

Meghan Longacre, Stuart Grande, Andreas Hager, Meera Montan, Rikard Palmer Bergquist, Maria Martensson, Greg Kotzbauer

JMIR Pediatr Parent 2018 (Dec 10); 1(2):e11080

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Assessing the Perceptions of Inspiratory Muscle Training in Children With Cystic Fibrosis and Their Multidisciplinary Team: Mixed-Methods Study

Jessica L McCreery, Kelly A Mackintosh, Narelle S Cox, Melitta A McNarry

JMIR Pediatr Parent 2018 (Oct 25); 1(2):e11189

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