Pulse
rettX Pulse lets a caregiver keep a simple, private record of everyday health observations about their person with Rett syndrome — seizures, medication, sleep, bathroom, menstrual cycle, side effects, and anything else — on a calendar, so they can look back over time and prepare for a doctor’s visit.
Pulse is a caregiver’s private notebook, not a clinical system. It is deliberately not a medical device and not an emergency tool — in an emergency, caregivers should always contact their local emergency services.
Who it is for
Section titled “Who it is for”The user is a caregiver — a parent or family member — not a clinician, and often non-technical. Pulse is designed for three moments, in priority order:
- Capture in the moment — “she just had a seizure”, “gave the 8am dose”. Loggable in seconds, one-handed. Speed and forgiveness come first.
- Routine daily logging — bathroom, a scheduled medication, a period. Habitual and low-friction, ideally one to three taps.
- Looking back — “what happened over the last three months?” Calm, review-oriented, scanning for patterns before a consultation.
How Pulse is built: the metric catalog
Section titled “How Pulse is built: the metric catalog”Pulse is generic. Rather than hard-coding one screen per health topic, every trackable thing is composed from a small set of reusable value primitives. A caregiver picks a metric, and only that metric’s fields appear — never a blank, generic form.
Value primitives
Section titled “Value primitives”| Primitive | What it captures | Example |
|---|---|---|
| Occurrence | Whether something simply happened | ”A seizure occurred” |
| Count | A whole number | Number of bathroom visits |
| Scale (1–5) | A rating or severity | Seizure severity |
| Duration | A length of time | How long a seizure lasted |
| Category | A choice from a fixed set of options | Stool type; flow level |
| Dose | An amount with a unit | 250 mg |
| Short text | A brief free-text value | A medication’s name |
| Note | Optional free-text notes | ”unusually tired afterwards” |
Every entry also carries a date (defaulting to today) and an optional time. Nothing else is mandatory — an entry can be saved with almost nothing and details added later.
Seed metrics
Section titled “Seed metrics”Six ready-made metrics ship as presets. Each is a composition of the primitives above; caregivers and administrators can also build custom metrics from the same building blocks.
| Metric | Code | Built from |
|---|---|---|
| Bathroom | bathroom | Category · Category · Note |
| Medication | medication | Short text · Dose · Note |
| Menstrual cycle | menstrual-cycle | Count · Category · Note |
| Seizure | seizure | Occurrence · Duration · Scale (1–5) · Note |
| Side effect | generic-side-effect | Scale (1–5) · Count · Category · Note |
| Sleep | sleep | Duration · Scale (1–5) · Count · Category · Note |
Versioning
Section titled “Versioning”Each metric definition is versioned. Editing a metric publishes a new version rather than mutating the old one; entries that were already logged keep the version they were recorded against. History therefore never changes retroactively — a chart of past seizures is not rewritten because the seizure metric was later adjusted. (The menstrual-cycle preset, for example, is currently at version 2.)
What the caregiver sees
Section titled “What the caregiver sees”Pulse lives as an item in the app navbar and is always scoped to one patient. It has three views:
- Calendar (home) — a month grid where days with entries show a subtle marker. A persistent, thumb-reachable ＋ Log button is the single most important control. Tapping a day reveals that day’s entries.
- Timeline — a reverse-chronological list of all entries across metrics, with filters (date range, metric, has-note) and note search.
- Metrics — each metric’s own history over a time range, plus light management of which metrics are tracked. This is the “prepare for the doctor” surface.
The critical flow is quick-log: tap ＋ Log, pick a metric, fill only the few fields that matter, and save — targeting three taps or fewer for a simple metric.
Menstrual cycle: one entry per period
Section titled “Menstrual cycle: one entry per period”A period is recorded as a single, start-anchored, always-editable entry: a start date plus a duration in days (pre-filled to a sensible default). There is no separate “end” event — closing or correcting a period is just an edit of the one record. This avoids periods that are left “ongoing forever” when an end is never logged.
How administrators manage the catalog
Section titled “How administrators manage the catalog”The metric catalog is global — a single source of truth, owned by the backend and administered from the rettX admin app. Administrators can view every definition, edit a metric’s labels or fields, translate labels into supported locales, retire a metric, or add a new one from the value primitives. Every such change publishes a new version, so live caregiver data is never disturbed.
This replaced an earlier state in which the catalog effectively existed in three hand-maintained copies (backend, caregiver app, admin tool) that could drift apart. The catalog is now defined once and consumed everywhere.
flowchart TD
admin["rettxadmin — admin app<br/>manage the catalog"]
api["rettxapi — owns the catalog and entries"]
web["rettxweb — caregiver app"]
admin -->|create · edit · retire definitions| api
api -->|serves versioned metric definitions| web
web -->|logs an entry against a definition version| api
Pulse ships in phases. Phase 1 (pilot) covers structured text/number logging and in-app review. The following are intentionally out of scope for the pilot and planned for later phases:
- Photo and video attachments
- PDF export for consultations
- Advanced charts, trends, and analytics
Changing after the pilot: medication
Section titled “Changing after the pilot: medication”Medication is currently logged like any other metric — a medication entry per
dose, per day. Spec 046 replaces that with a dated medication regimen: each
medication is recorded once with a start date and an optional end date, and the
app renders the familiar rows × time-of-day grid that caregivers already keep on
paper, shareable as a one-page A4 sheet. Day-to-day logging is then reserved for
exceptions — a missed, extra or changed dose. The medication metric will be
retired at that point; entries already logged keep rendering, and nothing is
migrated or deleted. The same spec adds weight and height as tracked
metrics.
Note that the medication sheet is generated on the caregiver’s own device and shared by them; it is not the general “PDF export for consultations” listed above, which remains out of scope.
Related work
Section titled “Related work”The Pulse feature is specified across several cross-cutting specifications in this control plane — the Pulse tracker (spec 035), the global metric-catalog administration (spec 036), the menstrual start-and-duration model (spec 037), sleep tracking (spec 038), and the medication regimen (spec 046) — each fanned out to the caregiver app, admin app, and backend.