Publications by authors named "Elizabeth Vroom"

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The FAIR journey of a patient-driven registry: Reflections and practical solutions from the Duchenne Data Platform FAIRification experience.
Nawel Lalout, Mark D Wilkinson, Dagmar Wandrei, Adrian Tassoni, Antonio Atalaia, Elizabeth Vroom

J Neuromuscul Dis· October 2025

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Development of the accredited duchenne centers program, a global program to achieve uniform and up-to-date care for all people living with duchenne muscular dystrophy.
Imelda J M de Groot, Karolina Podolská, Nathalie Goemans, Suzie-Ann Bakker, Nawel Lalout, Elizabeth Vroom

Orphanet J Rare Dis· July 2025

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Factors affecting desired participation in transition to an adult life with Duchenne muscular dystrophy (DMD).
Laura Jb Merkenhof, Yvonne Veenhuizen, Elizabeth Vroom, Greet Sterenberg, Wendy Chm Hesseling

J Neuromuscul Dis· May 2025

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Towards harmonization of clinical tools for assessing Brain Involvement in Dystrophinopathies (BIND); report of four expert workshops: Newcastle, Leiden, Rome, Paris.
Jos Hendriksen, Pien Weerkamp, Ruben Miranda, Anna Kolesnik, Daniela Chieffo, Elizabeth Vroom

Neuromuscul Disord· November 2024

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Harmonization of outcomes in epidermolysis bullosa: report of the Core Outcome Sets for Epidermolysis Bullosa (COSEB) kick-off meeting.
Eva W H Korte, Phyllis I Spuls, Peter C van den Akker, Dimitra Kiritsi, Martin Laimer, Elizabeth Vroom

Br J Dermatol· January 2024

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Moving Beyond the 2018 Minimum International Care Considerations for Osteoporosis Management in Duchenne Muscular Dystrophy (DMD): Meeting Report from the 3rd International Muscle-Bone Interactions Meeting 7th and 14th November 2022.
Kim Phung, Nicola Crabtree, Anne M Connolly, Pat Furlong, Eric P Hoffman, Elizabeth Vroom

J Neuromuscul Dis· January 2024

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Patient reported outcome measure for upper limb in Duchenne muscular dystrophy: correlation with PUL2.0.
Gianpaolo Cicala, Marika Pane, Giorgia Coratti, Claudia Brogna, Lavinia Fanelli, Elizabeth Vroom

Neuromuscul Disord· September 2023

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The Dilemma of Choice for Duchenne Patients Eligible for Exon 51 Skipping The European Experience.
Annemieke Aartsma-Rus, Liesbeth De Waele, Saskia Houwen-Opstal, Janbernd Kirschner, Yvonne D Krom, Elizabeth Vroom

J Neuromuscul Dis· May 2023

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A Comparison of Caregiver and Patient Preferences for Treating Duchenne Muscular Dystrophy.
Norah L Crossnohere, Ryan Fischer, Elizabeth Vroom, Patricia Furlong, John F P Bridges

Patient· September 2022

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The Role of Patient Involvement When Developing Therapies.
Annemieke Aartsma-Rus, Elizabeth Vroom, Daniel O'Reilly

Nucleic Acid Ther· April 2022

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How Patient Organizations Can Drive FAIR Data Efforts to Facilitate Research and Health Care: A Report of the Virtual Second International Meeting on Duchenne Data Sharing, March 3, 2021.
Nawel van Lin, Georgios Paliouras, Elizabeth Vroom, Peter A C 't Hoen, Marco Roos

J Neuromuscul Dis· February 2022

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Safety issues and harmful pharmacological interactions of nutritional supplements in Duchenne muscular dystrophy: considerations for Standard of Care and emerging virus outbreaks.
Brigida Boccanegra, Ingrid E C Verhaart, Ornella Cappellari, Elizabeth Vroom, Annamaria De Luca

Pharmacol Res· August 2020

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The evolution of patient-focused drug development and Duchenne muscular dystrophy.
Norah L Crossnohere, Ryan Fischer, Emily Crossley, Elizabeth Vroom, John Fp Bridges

Expert Rev Pharmacoecon Outcomes Res· February 2020

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Meeting on data sharing for Duchenne 21-22 March 2019 Amsterdam, the Netherlands.
Ingrid E C Verhaart, Peter A C 't Hoen, Marco Roos, Elizabeth Vroom,

Neuromuscul Disord· October 2019

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Muscle biopsies in clinical trials for Duchenne muscular dystrophy - Patients' and caregivers' perspective.
Ingrid E C Verhaart, Alex Johnson, Sejal Thakrar, Elizabeth Vroom, Fernanda De Angelis

Neuromuscul Disord· August 2019

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2nd Workshop on upper-extremity assistive technology for people with Duchenne: Effectiveness and usability of arm supports Irvine, USA, 22nd-23rd January 2018.
Mariska M H P Janssen, Joan Lobo-Prat, Arjen Bergsma, Elizabeth Vroom,

Neuromuscul Disord· August 2019

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Primary Care and Emergency Department Management of the Patient With Duchenne Muscular Dystrophy.
Garey Noritz, James Naprawa, Susan D Apkon, Kathi Kinnett, Fabrizio Racca, Elizabeth Vroom

Pediatrics· October 2018

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A Transition Toolkit for Duchenne Muscular Dystrophy.
Christina J Trout, Laura E Case, Paula R Clemens, Alexandra McArthur, Garey Noritz, Elizabeth Vroom

Pediatrics· October 2018

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Nutrition in Duchenne muscular dystrophy 16-18 March 2018, Zaandam, the Netherlands.
Ingrid E C Verhaart, Lenie van den Engel-Hoek, Marta L Fiorotto, Mirjam Franken-Verbeek, Elizabeth Vroom

Neuromuscul Disord· August 2018

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Meeting report of the "Regulatory Exchange Matters" session at the 5th International TREAT-NMD Conference:: Lessons in communication: How an early dialogue between patients, regulators and academics can further therapy development for neuromuscular disorders Freiburg, Germany, 27-29 November 2017.
Annemieke Aartsma-Rus, Eugenio Mercuri, Elizabeth Vroom, Pavel Balabanov

Neuromuscul Disord· July 2018

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[Re-use of medical data for research. What do the Dutch think of the requirement for explicit consent?].
Remco Coppen, Peter P Groenewegen, J M W Mieke Hazes, Judith D de Jong, Job Kievit, Elizabeth Vroom

Ned Tijdschr Geneeskd· November 2017

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Development of Exon Skipping Therapies for Duchenne Muscular Dystrophy: A Critical Review and a Perspective on the Outstanding Issues.
Annemieke Aartsma-Rus, Volker Straub, Robert Hemmings, Manuel Haas, Gabriele Schlosser-Weber, Elizabeth Vroom

Nucleic Acid Ther· October 2017

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Stakeholder cooperation to overcome challenges in orphan medicine development: the example of Duchenne muscular dystrophy.
Volker Straub, Pavel Balabanov, Kate Bushby, Monica Ensini, Nathalie Goemans, Elizabeth Vroom

Lancet Neurol· July 2016

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1st Workshop on Upper-Extremity Assistive Technology for People with Duchenne: State of the art, emerging avenues, and challenges: April 27th 2015, London, United Kingdom.
Arjen Bergsma, Joan Lobo-Prat, Elizabeth Vroom, Pat Furlong, Just L Herder

Neuromuscul Disord· June 2016

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Imperatives for DUCHENNE MD: a Simplified Guide to Comprehensive Care for Duchenne Muscular Dystrophy.
Kathi Kinnett, Sunil Rodger, Elizabeth Vroom, Pat Furlong, Annemieke Aartsma-Rus

PLoS Curr· August 2015

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