DermatologyRare Genetic Skin Fragility

The 3-hour bandage change your patient endured this morning is invisible to their medical record.

Epidermolysis Bullosa is a daily battle of wound care, pain management, and nutritional survival — yet clinical assessment relies on periodic wound counts and clinic-visit pain scores that miss the daily trajectory entirely. Three disease-modifying therapies launched between 2023-2025, and the field urgently needs real-world outcome data that no existing tool captures. Forma provides this continuous signal.

How it works

15 seconds of speech. 25 data points.

Forma turns each patient into a continuous data stream. By voice or text, patients and caregivers log daily wound counts, pain across three dimensions (background, procedural, breakthrough), itch severity, treatment application and per-wound response, nutritional intake, hand function changes, and suspicious wound changes in under a minute. Voice-first is essential — many EB patients have mitten hands from pseudosyndactyly and cannot type. The result is a structured, longitudinal dataset across every EB domain — Vyjuvek healing trajectories per treated wound, pain trends correlated with bandage change techniques, and cancer surveillance flags visible in real time.

Patient speaking

😊
Today

Forecast

Based on prior Topics logging

😴
Fatigue
MTWTFSS
🤗
Mood

Topics

💧
Cracking
🔥
Pain Level
💊
Moisturizing
💧
Itch Intensity
🔥
Skin Care
0
data points extracted
Research-Ready Dataset

Structured, coded, longitudinal

Timing
Time of onset:This morningShower duration:15 min
Location
Crack location:Feet
Severity
Crack count:3 newCrack status:New onsetPain severity:Extreme
Actions
Cream applied:Vanicream
Environmental
Humidity:34%Temperature:72°FAir quality (AQI):42 — Good
Outcome
Pain outcome:Significantly decreasedTreatment response:Positive

See Epidermolysis Bullosa configured for your study

See Forma configured for Epidermolysis Bullosa