Pachyonychia Congenita
The pain NRS's single 24-hour score plus the burning, the blisters, and the trimming that shaped every day behind it.
The pain Numeric Rating Scale is the workhorse of Pachyonychia Congenita trials, and it belongs in the study. It just wasn't built to carry what happens between the numbers. PC pain swings daily with weight-bearing, footwear, terrain, and sweat, so a single daily score flattens the day the left forefoot burned at an 8 all afternoon and the razor blade that hit a blood vessel during a trim. Keep scoring the NRS. Forma adds the continuous real-world stream that explains why the score moved.
Forecast
Based on prior Topics logging
Topics
How it works
15 seconds of speech. 25 data points.
Forma runs alongside the pain NRS, not instead of it. 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 month-long recall. The result is a structured, longitudinal stream around every NRS score: daily pain trajectories broken out by pressure, burning, and blister pain, trimming frequency mapped to relief or complication, and trigger patterns (concrete, heat, sweaty shoes) visible across weeks instead of 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 to 5 days. Your razor blade sessions led to bleeding in 3 of 8 uses, and your NRS 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 NRS average fell from 6.8 to 3.2. You haven't needed crutches in 12 days.
Pain trend
Summarize my month for the dermatologist.
NRS average 4.1 (range 2 to 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 NRS variance (SD 2.4) exceeds between-visit change in 78% of subjects. When patients recall a month at once, they underestimate peak pain by 2.1 points on average versus their daily NRS. Layering a stream that separates pressure and burning pain around the NRS surfaces 40% more signal than the score read alone.
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 to 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 that pairs the NRS with the Forma stream shows effect sizes (Cohen's d) of 0.72 for acitretin responders, versus 0.31 for a single end-of-study NRS read. A burning-type pain subscore alone reaches d=0.85 for gabapentin. Enriching the NRS with between-visit context could have powered a topline miss at a smaller sample size.
Endpoint sensitivity
Trend
The raw signal
11 days of raw patient data
The day-by-day voice log behind the insights above, and the detail that periodic check-ins can't capture.
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 NRS scores rise and fall, and her daily logs explain why. The razor-blade trimming complication on day 5 spiked pain from 7 to 9 and immobilized her for two days. The heat-and-concrete trigger on day 3 produced a blister within hours. The treatment response arc from the acitretin dose increase (day 9) and gabapentin addition (day 15) brought daily pain from 9 to a stable 3. By day 18, she went a full week without mobility aids. The NRS caught the trend. Forma caught the reasons a monthly clinic visit never would.
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