Pachyonychia Congenita
Two Phase 3 trials failed because they measured PC pain at the wrong frequency.
Pachyonychia Congenita pain fluctuates daily with weight-bearing, footwear, terrain, and sweat exposure — yet the two most advanced clinical trials failed because their primary endpoint captured only periodic clinic-visit snapshots. The pain that keeps patients crawling to the bathroom at night and the trimming sessions that go too deep are the data the field needs. Forma captures this daily signal.
Forecast
Based on prior Topics logging
Topics
How it works
15 seconds of speech. 25 data points.
Forma turns each patient into a continuous data stream. By voice or text, patients log daily pain intensity and type, plantar skin events, footwear and terrain triggers, trimming sessions with tool and outcome detail, and weekly quality-of-life impact in under a minute. No forms, no recall bias. The result is a structured, longitudinal dataset across every PC domain — daily pain trajectories disaggregated by pressure vs. burning vs. blister pain, trimming frequency correlated with pain relief or complication, and trigger patterns (concrete, heat, sweaty shoes) visible across weeks rather than remembered at a visit.
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Forecast
Based on prior Topics logging
Topics
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
From data to insights
What the data reveals
Daily voice logs compound into actionable insights — for patients managing their condition and for researchers running studies.
For Patients
Why is my pain so much worse some days?
Your worst days cluster around heat + concrete exposure. Last week's 9/10 day followed a humid grocery run on concrete. Cool, indoor days average 3/10. Sweat-soaked shoes preceded 4 of your 5 blister days this month.
Daily pain pattern
Is my trimming actually helping?
Ped egg sessions give 1.5 days of relief on average. Professional podiatrist paring lasts 4–5 days. Your razor blade sessions led to bleeding in 3 of 8 uses — and pain spiked the day after each one. Switching to emery board only has been safer.
Post-trim pain
Is the new medication working?
Since starting gabapentin 3 weeks ago, your burning-type pain dropped from nightly 7s to occasional 3s. Pressure pain is unchanged — that's the callus, not nerve. Overall pain average fell from 6.8 to 3.2. You haven't needed crutches in 12 days.
Pain trend
Summarize my month for the dermatologist.
Pain average 4.1 (range 2–9). Worst spike day 5: razor overtrimming hit a blood vessel. Acitretin increased to 35mg day 9 — callus growth slowing. Gabapentin added day 15 — burning pain cut in half. Three blisters this month, all heat-triggered. No mobility aids needed since day 18.
For Researchers
What is the real daily pain trajectory in PC?
Across 24 PC patients, daily pain variance (SD 2.4) exceeds between-visit change in 78% of subjects. Monthly recall scores underestimate peak pain by 2.1 points on average. A daily composite separating pressure vs. burning pain shows 40% more sensitivity than a single NRS.
Daily pain variance
Trend
What triggers predict pain flares?
Concrete walking (OR 3.2), ambient temp >85°F (OR 2.7), and closed-toe shoes >4 hours (OR 2.1) are the top flare predictors. Sweat exposure + heat compound: humid days with concrete produce 3.8-point pain increases vs. 1.2 for either alone.
Trigger impact
Trend
How does trimming frequency correlate with outcomes?
Patients trimming >3x/week have 2.1x more bleeding complications but no better pain relief than 1–2x/week trimmers. Professional paring every 2 weeks reduces self-trim complications by 64%. Razor blade users have 3.4x the complication rate of emery board users.
Trim frequency
Trend
Can daily data rescue failed trial endpoints?
Simulating a daily pain AUC endpoint on our cohort shows effect sizes (Cohen's d) of 0.72 for acitretin responders — vs. 0.31 for monthly NRS. Burning-type pain subscore alone achieves d=0.85 for gabapentin. Daily capture could have powered those Phase 3 failures at half the sample size.
Endpoint sensitivity
Trend
Pain about a 6, mostly pressure on the calluses. Wore orthotics with cushioned insoles. Stayed mostly at desk.
Trimmed calluses tonight with ped egg, about 20 minutes. Some relief. Left forefoot burning — maybe a 7.
Hot and humid day. Feet soaked by noon. New blister on right forefoot after walking on concrete at grocery store.
Used razor blade on right foot. Hit a blood vessel — bleeding a lot. Pain spiked to an 8 after.
Could barely walk. Crawled to the bathroom twice. Pain a 9. Sleep terrible — burning woke her every night this week.
Went to podiatrist for proper trim. Soaked feet first, then professional paring. Much better relief than DIY.
Doctor increased acitretin to 35mg. Pain down to a 4. Used crutches once today. Lips cracking from the retinoid.
Good day — pain a 2. Walked around the house fine. Light activity, cool and dry weather. No aids needed.
Started gabapentin 300mg at night for the burning. Drowsy but pain was a 3 — the burning type is less. Filed with emery board, 15 min, good relief.
Didn't need any mobility aids this week. Pain average about a 3. Went out once but had to leave early. Actually feeling hopeful — new meds helping.
Work was fine, sat at desk mostly. Sleep okay — woke once from burning but fell back asleep. No new blisters. Pain stable at 3.
Key insight
Over three weeks, Rachel's daily logs capture the endpoint data two Phase 3 trials couldn't: the razor-blade trimming complication on day 5 that spiked pain from 7 to 9 and immobilized her for two days, the heat-and-concrete trigger on day 3 that produced a blister within hours, and the treatment response arc from acitretin dose increase (day 9) and gabapentin addition (day 15) that brought daily pain from 9 to a stable 3. By day 18, she went a full week without mobility aids — a trajectory invisible to a monthly clinic visit.
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