Case Study
Cross-Platform App for Rare Disease Communities
A Multi-Language ePRO Platform for
Global Patient Engagement
Touchcore Systems partnered with Digital Infuzion to develop a mobile platform that enables patients with rare diseases to contribute real world data and participate in research more easily. The solution supports the International Fibrodysplasia Ossificans Progressiva Association (IFOPA) in engaging patients worldwide and advancing research for Fibrodysplasia Ossificans Progressiva (FOP).
The application was built as part of the Digital Infuzion LLC's N of 1™ research platform, designed to integrate clinical and real world patient data to support next generation clinical research and outcomes analysis
Client Overview
International Fibrodysplasia Ossificans Progressiva Association (IFOPA) is a non profit organization dedicated to improving the lives of individuals affected by FOP. The organization focuses on patient education, community support, research funding, and global awareness for this rare genetic condition.
To strengthen global participation and improve data collection from patients, IFOPA needed a secure and accessible digital platform.
The Challenge
Rare disease research faces several barriers:
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Limited patient populations scattered across countries
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Difficulty collecting consistent patient reported outcomes
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Language barriers that limit global participation
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The need for secure handling of sensitive health data
IFOPA required a solution that could improve engagement, increase participation, and streamline data collection from patients worldwide.
The Solution
Touchcore Systems developed a cross platform mobile application for electronic Patient Reported Outcomes (ePRO) that enables patients to submit health data directly from their smartphones. The platform was designed with a patient first approach and includes features that simplify participation while maintaining high standards of security and compliance.
Key Capabilities
1. Cross Platform Mobile App
Native mobile applications for both iOS and Android allow patients to access the platform from their preferred devices.
2. Multi Language Support
The application supports multiple languages, enabling global participation and expanding the reach of the FOP patient registry.
3. eConsent Integration
Patients can securely provide electronic consent to participate in the registry and research programs.
4. Survey Scheduling
Automated scheduling helps ensure timely survey submissions and improves study compliance.
5. Push Notifications
Mobile notifications remind participants to complete surveys and stay engaged with research activities.
6. Security First Design
The platform follows strict security standards to protect sensitive patient health information.
7. Configurable Architecture
Flexible system design allows future updates, enhancements, and feature expansion without disrupting users.
Outcomes
The project resulted in a secure and scalable mobile platform that improves global participation in rare disease research.
Key benefits include:
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Increased patient participation worldwide
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Improved engagement through a user friendly mobile experience
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More frequent and reliable patient reported data
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Secure and compliant handling of sensitive health information
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Scalable infrastructure ready for future research initiatives
The platform now enables researchers and clinicians to gain deeper insights into FOP, helping accelerate the development of treatments and improve patient care.