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PERSPECTIVE article

Front. Digit. Health

Sec. Health Technology Implementation

Smartphone Apps in Rare Disease Care: A Dutch Perspective on Effective Implementation

Provisionally accepted
Ilse  WillemseIlse Willemse*Marit  MolMarit MolRozanne  van DiggelenRozanne van DiggelenPieter  van den HaakPieter van den HaakBart  Van De WarrenburgBart Van De Warrenburg
  • Radboudumc Afdeling Neurologie, Nijmegen, Netherlands

The final, formatted version of the article will be published soon.

Smartphone-based health applications offer promising opportunities for personalized and continuous monitoring in healthcare. However, many apps remain confined to research settings and are never implemented in clinical practice. Moreover, the development and implementation of apps for rare diseases is significantly lagging behind. This perspective outlines six key themes critical to the successful development and implementation of health apps, drawing on insights from Dutch stakeholders. These include: stakeholder collaboration, development, ownership, financing, integration into hospital-based care, and patient use. Our perspective additionally discusses specific barriers, including regulatory constraints, funding challenges, and usability limitations, alongside facilitators such as co-creation with end users, early stakeholder involvement, implementation planning, and leveraging existing care networks. Specific challenges for rare diseases, such as limited patient populations, funding constraints, and difficulties in clinical validation and regulatory compliance, are also addressed, with potential solutions proposed. This perspective offers concrete This is a provisional file, not the final typeset article recommendations to support the transition of health apps from research to clinical practice. Sustainable implementation requires early and ongoing stakeholder engagement, flexible strategies adapted to small-scale contexts, a strong focus on end users' needs, and an impact-driven implementation plan already established at the start of development.

Keywords: Smartphone application, Digital Health, Rare Diseases, implementation, Stakeholder management

Received: 11 Jul 2025; Accepted: 27 Oct 2025.

Copyright: © 2025 Willemse, Mol, van Diggelen, van den Haak and Van De Warrenburg. This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY). The use, distribution or reproduction in other forums is permitted, provided the original author(s) or licensor are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.

* Correspondence: Ilse Willemse, ilse.willemse@radboudumc.nl

Disclaimer: All claims expressed in this article are solely those of the authors and do not necessarily represent those of their affiliated organizations, or those of the publisher, the editors and the reviewers. Any product that may be evaluated in this article or claim that may be made by its manufacturer is not guaranteed or endorsed by the publisher.