ReviewJournal of medical Internet research2022
Mobile Apps for People With Rare Diseases: Review and Quality Assessment Using Mobile App Rating Scale.
Review in Journal of medical Internet research, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 15 papers, 5 of them syntheses that pooled it.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
15 citing papers in PubMed, 5 syntheses or guidelines pooled it, 28 citations in OpenAlex.
- Evaluation of fatty liver disease self-care applications: a systematic review and evaluation of apps using the mobile application rating scale (MARS).BMC gastroenterology · 2026Pooled it
- Evaluating the Quality and Features of Visual Acuity Apps Using the Mobile App Rating Scale: Systematic Review.JMIR mHealth and uHealth · 2025Pooled it
- Self-Management Support Apps for Spinal Cord Injury: Results of a Systematic Search in App Stores and Mobile App Rating Scale Evaluation.JMIR mHealth and uHealth · 2024Pooled it
- User Engagement With mHealth Interventions to Promote Treatment Adherence and Self-Management in People With Chronic Health Conditions: Systematic Review.Journal of medical Internet research · 2024Pooled it
- Cross-Cutting mHealth Behavior Change Techniques to Support Treatment Adherence and Self-Management of Complex Medical Conditions: Systematic Review.JMIR mHealth and uHealth · 2024Pooled it
- Telemedical communication patterns in myasthenia gravis in a remote monitoring study.Neurological research and practice · 2026Article
- Mobile Applications for Sepsis-Related Healthcare: A Systematic Search and Evaluation Within App Stores.Health science reports · 2026Article
- Co-creation process of an app for people with rare diseases - a citizen science approach.Orphanet journal of rare diseases · 2025Article
- AppER: Design and Validation of a Mobile Application for Caregivers of Patients with Duchenne Muscular Dystrophy and Their Families in Spain and Latin America.Muscles (Basel, Switzerland) · 2025Article
- The Effectiveness of a Mobile National Remote Emergency System for Malignant Hyperthermia in China: Retrospective Pre-Post Implementation Study.Journal of medical Internet research · 2025Article
- Quality Evaluating Mobile Health Apps for Oral Hygiene Management Using the Mobile Application Rating Scale (MARS): A Systematic Review of Smartphone App Markets.Medical journal of the Islamic Republic of Iran · 2025Review
- Patient Preference and Mobile Application Use in Hemophilia A: A Cross-Sectional Survey from Eastern Europe.Journal of patient experience · 2025Article
- Evaluation of mobile applications related to patients with Parkinson's disease based on their essential features and capabilities.BMC medical informatics and decision making · 2024Article
- Development of a Digital Patient Assistant for the Management of Cyclic Vomiting Syndrome: Patient-Centric Design Study.JMIR formative research · 2024Article
- The use of artificial intelligence in the treatment of rare diseases: A scoping review.Intractable & rare diseases research · 2024Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
6 authors at 2 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundMobile apps are becoming increasingly popular, with 5.70 million apps available in early 2021. Smartphones can provide portable and convenient access to health apps. Here, we consider apps for people with one of the estimated 7000 rare conditions, which are defined as having an incidence of <1 in 2000. The needs of people with rare conditions are known to be different from those of people with more common conditions. The former may be socially isolated (not knowing anyone else who has the condition) and may not be able to find reliable information about the disorder.
objectiveThe aim of this review is to search for apps developed specifically for people diagnosed with a rare disease and to assess them for quality using the Mobile App Rating Scale (MARS). We examine features that address 6 identified needs of people with a rare disorder and make recommendations for future developers.
methodsGoogle Play Store (Android) and Apple App Store (iOS) were searched for relevant health-related apps specifically for rare diseases. The search included the names of 10 rare disease groups. App quality was determined using MARS, assessing app engagement, functionality, aesthetics, and information.
resultsWe found 29 relevant apps (from a total of 2272) addressing 14 rare diseases or disease groups. The most common rare conditions addressed were cystic fibrosis (n=6), hemophilia (n=5), and thalassemia (n=5). The most common app features were web-based information and symptom trackers. The mean MARS score was 3.44 (SD 0.84). Lowest scores were for engagement.
conclusionsMost apps provided factual and visual information, providing tools for self-monitoring and resources to help improve interactions during health consultations. App origin and quality varied greatly. Developers are recommended to consider ways to make appropriate apps more easily identifiable to consumers, to always include high-quality information, improve engagement, provide qualitative evaluations of the app, and include consumers and clinicians in the design.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.