DMD Sathi: A Personalised Digital Care Guidance System for DMD Patients & Parents

Abstract

Duchenne muscular dystrophy (DMD) is a progressive X-linked neuromuscular disorder that requires continuous, multidisciplinary care involving neuromuscular specialists, rehabilitation, nutrition, respiratory and cardiac monitoring, medication management, and emergency planning. Families may face difficulty locating understandable and locally relevant information, particularly when information is available in only one language or when healthcare resources are distributed across different providers. This paper presents DMD Sathi, a multilingual web-based guidance portal designed to organize DMD-related educational and care-navigation information for parents and caregivers. The implemented prototype provides English, Hindi, and Marathi language support; child-profile setup; broad age-group organization for 2–5, 6–12, and 13–21 years; symptom and age guidance; nutrition planning with vegetarian/non-vegetarian options; exercise and physiotherapy educational resources; medicine information with generic/conventional and Ayurvedic/complementary-care categorization; emergency guidance; and a healthcare-facility map focused on Nagpur. The system is implemented as a client-side React and TypeScript web application using Vite and React Router. The design intentionally avoids presenting the portal as a diagnostic or prescribing system; it provides educational guidance and encourages consultation with qualified healthcare professionals. For context, a 2026 peer-reviewed Indian study estimated an Indian DMD burden of approximately 51,402 patients using a prevalence estimate of 7.1 cases per 100,000 males and India’s male population; this is an epidemiological estimate rather than a national patient registry count. The proposed portal aims to reduce information fragmentation and improve access to understandable, localized, and age-organized DMD care information for families.

Introduction

DMD Sathi is a web-based information and care-navigation portal designed to support parents and caregivers of children with Duchenne muscular dystrophy (DMD). DMD is a genetic neuromuscular disorder caused by changes in the DMD gene that affect dystrophin, leading to progressive muscle weakness and complications involving multiple body systems. Managing the condition requires coordinated care across neurology, physiotherapy, nutrition, respiratory and cardiac health, orthopaedics, and psychosocial support. However, families may face difficulties accessing reliable information because of language barriers, limited healthcare availability, geographical differences, and financial constraints.

The project addresses these challenges by developing a single, multilingual, parent-oriented platform that organizes general DMD information and connects families with relevant healthcare resources. The literature review highlights the importance of multidisciplinary care and discusses Indian studies on DMD prevalence and clinical populations. One cited 2026 study estimates approximately 51,402 people with DMD in India, although this is an epidemiological estimate rather than a confirmed national registry count.

The main objective of DMD Sathi is to simplify access to DMD-related educational resources through an accessible and organized web interface. The portal supports English, Hindi, and Marathi and groups educational guidance into three age categories: 2–5 years, 6–12 years, and 13–21 years. It includes several functional modules:

• DMD education and age guide: Provides general information about the disease and age-related care considerations.

• Nutrition planner: Offers food suggestions based on age and vegetarian or non-vegetarian preferences.

• Exercise and physiotherapy: Organizes educational resources and emphasizes individualized professional guidance.

• Medicine information: Presents conventional and Ayurvedic or complementary-care information without prescribing medicines or dosages.

• Care centre and healthcare map: Helps users explore relevant healthcare facilities and services in Nagpur.

• Emergency module: Helps families prepare essential information and emergency contact details.

• Child profile and dashboard: Organizes relevant information and provides access to the portal's care modules.

The system is developed using React 19, TypeScript, Vite, React Router, Lucide React, CSS, and structured JSON data. Its modular, client-side architecture supports language selection, child profiles, nutrition preferences, medicine records, emergency information, and healthcare-facility listings. The proposed workflow guides users from the public information page through language selection and profile setup to a personalized dashboard.

The prototype demonstrates an organized navigation flow that brings multiple categories of DMD-related information together in one place. Its key contribution is improving the accessibility and presentation of educational resources while supporting healthcare discovery for families. However, the portal has important limitations: it cannot diagnose DMD, predict disease progression, prescribe treatments, or replace professional medical advice. Healthcare information may become outdated, and the current client-side implementation would require secure authentication, backend storage, privacy controls, and audit logging before handling real patient records at scale.

Conclusion

DMD Sathi presents a structured approach to organizing DMD-related educational and care-navigation information for parents and caregivers. The project combines multilingual access, child-profile and age organization, nutrition planning, physiotherapy resources, medicine education, emergency preparation, and local healthcare navigation in one web interface. Its design is aligned with the multidisciplinary nature of DMD care while maintaining a clear boundary between education and clinical decision-making. The Indian burden estimate cited in this paper indicates a substantial population-level need for accessible DMD support, while existing Indian studies demonstrate the presence of DMD within clinical and genetic-service cohorts. The current prototype provides a foundation for future clinical content validation, usability evaluation, secure patient-data handling, and expansion to additional regions

References

[1] D. J. Birnkrant, K. Bushby, C. M. Bann, S. Apkon, T. A. Blackwell, et al., “Diagnosis and management of Duchenne muscular dystrophy, part 1: diagnosis, and neuromuscular, rehabilitation, endocrine, and gastrointestinal and nutritional management,” The Lancet Neurology, vol. 17, no. 3, pp. 251–267, 2018. [2] D. J. Birnkrant, K. Bushby, C. M. Bann, S. Apkon, T. A. Blackwell, et al., “Diagnosis and management of Duchenne muscular dystrophy, part 2: respiratory, cardiac, bone health, and orthopaedic management,” The Lancet Neurology, vol. 17, no. 4, pp. 347–361, 2018. [3] D. J. Birnkrant, K. Bushby, C. M. Bann, S. Apkon, T. A. Blackwell, et al., “Diagnosis and management of Duchenne muscular dystrophy, part 3: primary care, emergency management, psychosocial care, and transitions of care across the lifespan,” The Lancet Neurology, vol. 17, no. 5, pp. 445–455, 2018. [4] M. Muranjan et al., “Economic burden of Duchenne muscular dystrophy from a societal perspective in Mumbai, India,” Journal of Postgraduate Medicine, vol. 72, no. 1, 2026. The study estimates 51,402 patients in India using an India-specific prevalence calculation. [5] “Burden of rare genetic disorders in India: twenty-two years’ experience of a tertiary centre,” 2024, reporting 291 DMD cases among its neuromuscular and neurodevelopmental cohort. [6] “Study of Clinical Features and Diagnosis Pattern of Duchene Muscular Dystrophy in Southern India,” 2021/2022, reporting a registered population of 400 clinically confirmed DMD patients and detailed analysis of 250 participants. [7] “Duchenne Muscular Dystrophy: Genetic and Clinical Profile in the Population of Rajasthan, India,” Indian Journal of Human Genetics / related indexed literature, reporting the commonly cited incidence of approximately 1 in 3,500 live births. [8] “Prevalence Study of Duchene Muscular Dystrophy and its Genetic Sequence in Southern India,” 2022/2023, observational study of 250 genetically confirmed DMD patients. [9] DMD Sathi Project Prototype, authors’ implementation, React/TypeScript/Vite application source code, 2026.

Copyright

Copyright © 2026 Chinmai Barai, Chaitanya Badwaik, Ranjit Dupare, Ayush Karemore, Aniket Malekar, Shyam Naik. This is an open access article distributed under the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.