Ichthyosis
The DLQI's one-week recall plus the scaling, itch, and skincare burden of every single day inside that week.
The DLQI captures a real signal: itch, embarrassment, and treatment burden scored once, over the last week. Ichthyosis moves faster than that. Severity swings day to day with humidity, skincare adherence, and flares, and the multi-hour routine that IS the treatment generates a data trail no weekly questionnaire records. Forma keeps the DLQI and adds the daily stream underneath it, so the score arrives with the three weeks of lived reality that produced it.
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 that runs alongside the DLQI, never in place of it. By voice or text, patients and caregivers log daily skin severity, skincare routine completion, itch intensity, thermoregulation events, infection signs, and environmental conditions in under a minute. No forms, no recall bias, and voice matters because caregivers' hands are covered in Aquaphor. The result is a structured, longitudinal dataset across every ichthyosis domain: daily scaling trajectories paired with routine adherence, itch severity correlated with environmental triggers, and thermoregulation events captured the day they happen instead of recalled at the next visit. The DLQI still gives you the validated weekly measure. Forma gives you the days behind it.
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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
What's my risk of cracking tomorrow?
High risk. Humidity is dropping to 24% tomorrow, and your cracking severity has risen 1.6 pts within 48h of humidity below 30% in the past.
Cracking vs. humidity
Is my skincare routine actually working?
Yes. On days you complete the full Aquaphor soak + CeraVe, your next-day scaling drops 1.8 pts. Abbreviated routine days show +0.3 pts.
Scaling after full routine
Why does my itch get worse in the afternoon?
Your itch peaks 4-6 hours after skipping moisturizer. Yesterday you did an abbreviated routine, so today's afternoon risk is moderate.
Can you summarize my last 3 weeks for my doctor?
Scaling improved from 5 to 1. One MRSA episode on days 5-16, resolved with antibiotics. Adding a humidifier on day 13 correlated with your first full night of sleep. Weight up from 32 to 33 lbs.
For Researchers
How do acitretin responders compare to non-responders?
In 47 lamellar ichthyosis patients, responders (n=31) show a mean scaling reduction of -2.4 pts by week 3 (p<0.01). Non-responders plateau at week 2.
Responder trajectory
Trend
How well do patients do that adhere to the recommended routine?
Patients with >80% routine completion: 89% show improvement. Below 60%: only 34% improve. Voice logging drives 91% adherence vs 43% with paper diaries.
Adherence vs. outcome
Trend
What environmental factors predict flares?
Humidity below 30% is the strongest predictor of next-day scaling increase (OR 3.2, 95% CI 2.1-4.8). A combined model with temperature and AQI explains 41% of daily variance.
Humidity impact
Trend
What is the real caregiver burden?
Mean daily routine is 72 minutes (SD 23). Routine duration correlates with caregiver depression scores (r=0.61). Voice logging saves 15 min/day compared to paper journals.
Daily routine (min)
Trend
The raw signal
12 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.
Baseline day. Luca's scaling moderate on legs and trunk, about a 5 out of 10. Full bath and Aquaphor routine, about an hour. Itch mild, maybe a 2.
Cracks behind both ears. Took acitretin with breakfast. Skin tight, can barely close fists. Scaling worse, maybe a 7.
Skipped the morning routine, running late for school. Scratching arms nonstop since lunch. Itch about a 6.
Overheated at daycare, brought inside with wet towels. Bright red and flushed. Skin redness worse on face, scaling about a 7.
Noticed warm swollen spot on his arm. Calling dermatologist. Bath was hard. He screamed when water touched the cracks.
Doctor confirmed the infection is MRSA. Started antibiotics. Arm spot is oozing. Up three times scratching last night, itch about an 8.
Applied Bactroban to the infected spot twice. Scaling on scalp thick, flaking onto pillow, about a 7. He barely ate. Acitretin nausea.
Salt bath with oatmeal, then full Aquaphor coverage. Infection spot shrinking. Skin looks better, scaling down to about a 4.
Added humidifier to his bedroom. Itch down to about a 3. Slept through the night for the first time this week.
Good skin day. Scaling mild, barely noticeable on arms, maybe a 2. He ate a great dinner. Infection spot cleared.
He's been in a great mood all week, no comments at school. Scaling about a 5, moderate but no fissures.
The redness is almost gone, scaling about a 1. Best he's looked in weeks. Weighed 33 pounds at the pediatrician, up from 32.
Key insight
A single DLQI at the next visit would score this whole stretch as one bad week. Maria's daily logs reveal what that number cannot: a skipped skincare routine on day 3 that preceded worsening itch by 24 hours, a thermoregulation crisis at daycare on day 4, and an MRSA infection caught on day 5, two days before a weekend appointment could have been scheduled. The infection-to-resolution arc from day 5 to day 16 is visible in the daily data, and the bedroom humidifier added on day 13 correlates with Luca's first full night of sleep. The clinician still gets the validated score. Now they get the days behind it.
See Ichthyosis configured for your study
See Forma configured to run alongside the DLQI