Pachyonychia Congenita Monitoring
Daily plantar pain and function monitoring designed for the PC community, capturing the longitudinal data that clinic visits miss and clinical trials need.
Study Overview
About this study
Pachyonychia Congenita produces plantar pain that fluctuates daily with weight-bearing, footwear, terrain, and sweat exposure — yet the two most advanced PC clinical trials failed because their primary endpoint captured only periodic clinic-visit snapshots. Forma Health captures daily pain intensity, pain type, functional ceiling, skin events, trimming outcomes, and environmental triggers by voice, producing the longitudinal dataset the field needs to design sensitive trial endpoints and understand what daily life with PC actually looks like across genotype subtypes and seasons.
What's included
Key features
- Daily plantar pain and functional ceiling assessment by voice
- Structured trimming and paring logs with tool and outcome tracking
- Environmental trigger capture linking footwear, terrain, and sweat to pain
- Event-based blister, callus, and fissure documentation with photos
- Weekly quality-of-life and mobility aid usage tracking
- Genotype-aware design supporting K6a, K6b, K6c, K16, and K17 subtypes
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.
PC Daily Pain Assessment
Daily composite capturing pain intensity, pain type, affected regions, functional ceiling, and worst time of day.
Sample questions
- What was your pain level today (0-10)?
- What type of pain — callus pressure, burning, blister?
- Which areas of your feet were affected?
- Could you walk normally or did you need aids?
Foot Care & Self-Management
Log trimming and paring sessions with tools used, outcome, and time spent.
Sample questions
- What tool did you use to trim?
- Did you get relief or did it bleed?
- How long did you spend on foot care?
- Which foot did you work on?
Triggers & Environment
Daily capture of footwear, terrain, sweat exposure, and weather as pain covariates.
Sample questions
- What shoes did you wear today?
- What surfaces did you walk on?
- How sweaty were your feet?
- What was the weather like?
Quality of Life
Weekly check-in on sleep disruption, emotional state, and social participation.
Sample questions
- Did pain disrupt your sleep this week?
- How are you feeling emotionally?
- Were you able to participate in social activities?
- Did you miss school or work?
Ready to see Pachyonychia Congenita Monitoring in action?
Book a demo and we'll walk you through this study configuration live.