Ichthyosis Monitoring
Voice-first daily tracking of skin severity, skincare routine adherence, itch, thermoregulation events, and infection signs for patients and caregivers managing inherited ichthyosis.
Study Overview
About this study
Ichthyosis severity fluctuates daily with environmental conditions, skincare adherence, and disease flares — yet clinical assessment relies on snapshot severity scores taken weeks or months apart. The Forma Health Log App captures this daily variability by voice, producing continuous trajectories across scaling, itch, thermoregulation, infection, and caregiver burden that no existing tool provides. Designed for both caregivers managing children with severe congenital forms and adults self-managing milder subtypes, voice logging is uniquely suited because patients' and caregivers' hands are occupied during multi-hour skincare routines.
What's included
Key features
- Voice-first skin severity logging across body regions, mapped to VIIS/ISS clinical domains
- Daily skincare routine tracking with time-spent measurement to quantify caregiver burden
- Itch intensity capture using the validated I-NRS scale with trigger and relief tracking
- Thermoregulation event monitoring for patients with anhidrosis or hypohidrosis
- Skin infection surveillance with MRSA tracking and healthcare contact logging
- Environmental factor correlation — weather, humidity, season, and setting vs. skin response
- Pediatric growth and nutrition tracking for failure-to-thrive monitoring
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.
Skin Condition Assessment
Daily assessment of scaling severity, erythema, and fissuring across body regions.
Sample questions
- How severe is the scaling today?
- Which body regions are affected?
- Are there any new fissures or cracks?
- How does the skin compare to yesterday?
Skincare Routine
Track bathing, emollient application, keratolytic use, and total time spent on care.
Sample questions
- Was a bath or soak done?
- Which products were applied?
- How long did the routine take?
- Was the full routine completed?
Itch
Track itch intensity on the I-NRS scale, location, triggers, and relief methods.
Sample questions
- How intense is the itch on a 0-10 scale?
- Where is the itch located?
- What triggered it?
- Did anything help relieve it?
Thermoregulation
Monitor overheating episodes, sweating ability, and cooling interventions.
Sample questions
- Was there an overheating episode?
- How severe was it?
- Was the patient able to sweat?
- What cooling measures were used?
Environmental Factors
Track how weather, humidity, and setting affect skin condition day to day.
Sample questions
- What were the weather conditions?
- Was the skin better or worse than usual?
- Where was the patient (home, school, outdoors)?
Ready to see Ichthyosis Monitoring in action?
Book a demo and we'll walk you through this study configuration live.