Epidermolysis Bullosa
Voice-first health observation platform for Epidermolysis Bullosa, capturing wound status, pain, itch, nutrition, treatment response, and quality of life through natural language.
Study Overview
About this study
Epidermolysis Bullosa encompasses a group of rare inherited skin fragility disorders where trivial mechanical trauma causes blistering, creating a daily burden of wound care, pain management, and nutritional support that is largely invisible to clinicians between visits. Forma Health captures continuous patient-reported data across all EB clinical domains — wound trajectory, multi-dimensional pain, itch severity, treatment response to gene therapies, nutritional status, hand function decline, and cancer surveillance — through voice-first natural language input designed for patients with severe hand dysfunction. This longitudinal data fills the gap between clinic-based assessments and cross-sectional registry surveys, serving both clinical care and the urgent real-world evidence needs of the rapidly expanding EB therapeutic landscape.
What's included
Key features
- Voice-first wound status logging with daily blister count and healing trajectory tracking
- Multi-dimensional pain capture separating background, procedural, and breakthrough pain
- Gene therapy and wound treatment response tracking per treated wound (Vyjuvek, Filsuvez)
- Itch severity monitoring with scratch-damage impact tracking
- Bandage change session logging with duration, product, and complication capture
- Nutritional intake and swallowing difficulty assessment with weight tracking
- Pseudosyndactyly and hand function progression monitoring
- Cancer surveillance flagging for non-healing wounds and biopsy tracking
Topic Configuration
Configured topics
Each study includes pre-configured topics that patients interact with daily. Here are examples of how we've set up data collection for this study.
Wound Status
Sample questions
- How many active wounds today?
- Any new blisters?
- Are wounds improving or worsening?
- Which body regions are affected?
Pain
Sample questions
- What is your background pain level (0-10)?
- How bad was bandage change pain?
- Any breakthrough pain episodes?
Treatment Application
Sample questions
- Which treatment was applied?
- Which wounds were treated?
- How are treated wounds responding?
Itch / Pruritus
Sample questions
- How severe is the itch (0-10)?
- Where is the itch worst?
- Any skin damage from scratching?
Wound Care Session
Sample questions
- How long did the bandage change take?
- Which products were used?
- Any complications during the change?
Ready to see Epidermolysis Bullosa in action?
Book a demo and we'll walk you through this study configuration live.