Structure
Five domains, five cohorts each. Domains 1 to 3 hold patients and produce care maps. Domains 4 and 5 hold providers and produce rosters. Everything on this site, in Slack and in the document library hangs off that grid.
The grid
A domain is one angle on the standing question: where is the genomic signal in this patient?
| Domain | The angle | Produces |
|---|---|---|
| 1. Complex disease | The patient in front of you doesn't fit. What's the signal, and how do we find it? | Care maps |
| 2. Treatable monogenic disease | A diagnosis would change treatment. Which adults are walking around undiagnosed, and how do we recognize them? | Care maps |
| 3. Population genetics | The patient is well. What does the genome say about risk, and what do we do with it? | Care maps |
| 4. Diagnostic support | Who runs the study, assay or consult an anchor physician needs, at a published price? | Rosters |
| 5. Private practice | Who are the independent clinicians, and what do they bring to a care map? | Rosters |
A cohort is one cell of the grid: a defined group of patients (domains 1 to 3) or providers (domains 4 and 5), with a Slack channel, a page on this site, and a care map or a roster. Twenty-five cohorts exist on paper. Five are launched. The rest open as members take them on. The domains page lists all twenty-five.
Patient cohorts and care maps
A patient cohort is defined by its anchor question: the one clinical question every patient in it shares. Connective tissue asks whether this is hEDS or HSD, or a genetic connective tissue disorder that changes management. Hereditary cancer asks who in this family needs testing and what surveillance follows. If a proposed cohort won't reduce to one anchor question, it's probably two cohorts.
Every care map has the same shape: seven roles across three yearly cycles.
| Role | What it owns |
|---|---|
| Anchor | The primary care physician who owns the plan, the referrals and the follow-through |
| Genetics | Diagnosis, test selection, variant interpretation, reanalysis, cascade testing |
| Specialists | The organ-system specialists the condition needs, drawn from the specialist roster |
| Diagnostics | Imaging, procedural studies and assays, drawn from the diagnostic support rosters |
| Therapies | Physical, occupational, speech and other therapies, drawn from the therapists roster |
| Behavioral health and nutrition | On every map, because every chronic genetic condition needs them |
| Community | Patient organizations, kept independent of the network |
| Cycle | The job of that year |
|---|---|
| Year 1: Establish | Make or confirm the diagnosis, assemble the team, set the baseline |
| Year 2: Treat | Deliver the treatment or surveillance the diagnosis calls for; measure response |
| Year 3: Sustain | Maintenance, reanalysis, the family, and handing the plan back to routine primary care |
Every cell is a cited recommendation. Care maps recommend; they never require. Where the evidence is a guideline, not a trial, the map says so. Where guidelines disagree, it shows the range.
Provider cohorts and rosters
A provider cohort is defined by what it supplies to the care maps. Its roster lists who supplies it, with what an anchor physician needs to send a patient: what they do, a published cash price or a price on request, whether they run requested protocols, and whether they write back.
Every roster has the same four parts: what the care maps need from the cohort, the vetting criteria, the current entries and the build plan. Members propose and vet entries in the cohort's Slack channel. Nobody is listed without a member vouching for them, and nobody pays to be listed.
How a cohort starts
- Propose. A member posts the anchor question (patient cohort) or the supply gap (provider cohort) in #cases or the nearest cohort channel, with a paragraph on why it needs its own cohort.
- Lead. One member takes it on. The lead owns the first care map or roster draft and the first journal club session on the topic.
- Open. The cohort gets a Slack channel, a page on this site marked Forming, and a line on the domains page. That's all it takes to open.
- Map. The lead drafts the care map or roster from the templates in the members' cohort playbook. The first draft will be thin. The point is something to argue with.
- Present. The cohort takes one journal club session: the map or roster, the readings behind it, the open questions.
- Launch. After the session the cohort is marked Active, the PDF goes into the document library, and the map is reviewed yearly.
A cohort with no activity for a year is marked Paused. Its page stays up. Nothing is deleted.
Status vocabulary
| Status | Meaning |
|---|---|
| Drafted | Map or roster written by the convener and not yet reviewed; the page carries a banner saying so |
| Seeking a lead | Map or roster reviewed; page and channel open; waiting for a member to lead it |
| Forming | Has a lead and a channel; map or roster in draft |
| Launch cohort or Launch roster | One of the five the network opened with |
| Active | Presented at journal club; map or roster published and reviewed yearly |
| Paused | No activity for a year; page and channel kept |
Naming conventions
One short name everywhere, so a cohort is findable from any direction.
| Where | Pattern | Example |
|---|---|---|
| Cohort name | Short, singular, generalizable; the condition family or the supply, not a diagnosis | Connective tissue disease |
| Site URL | /cohorts/<slug>/, lower-case, hyphenated | /cohorts/connective-tissue/ |
| Domain URL | /domains/<slug>/ | /domains/complex-disease/ |
| Slack channel | #cohort-<slug> | #cohort-connective-tissue |
| Care map PDF | ccn-caremap-<slug>.pdf | ccn-caremap-connective-tissue.pdf |
| Roster PDF | ccn-roster-<slug>.pdf | ccn-roster-specialist.pdf |
| Page tags | Kind, domain, channel and PDF, shown under every cohort title | Patient cohort · Complex disease · #cohort-connective-tissue |
When a cohort is renamed, the old URL redirects to the new one and the channel is renamed, not recreated, so history is kept.
Deliberately not here
No patient layer, no industry sponsorship, no fee, and no requirement that any member follow any map. The network exists so independent physicians can think together; the structure makes the thinking reusable.