How to use this
Find the row that matches what you are stuck on. Each entry says what that kind of partner gives you, at what stage to approach them, and what they will expect from you, which is usually the part groups are unprepared for.
Forking this page
If you are adapting this site for a specific condition, this is the page to make concrete. Replace each category with the two or three real organizations that serve your community, and date the page so readers know how fresh it is.
Peer and umbrella networks
Organizations of organizations. They exist so that a group of six volunteers does not have to solve alone what forty groups have already solved.
| What they give you | Templates, introductions, shared negotiating position, and a place to ask an embarrassing question. |
|---|---|
| When to approach | Stage 1 onward. Earlier than most groups think. |
| What they will ask for | Very little. Usually a description of your community and a willingness to participate. |
Data commons and repositories
Where standardized data goes to be discoverable and reusable beyond the group that collected it.
| What they give you | Durable hosting, a discovery layer, access governance machinery you would otherwise build, and citability. |
|---|---|
| When to approach | Stage 3–4, once you have a data dictionary. Talking to them earlier is still useful because it tells you what they will expect. |
| What they will ask for | A documented dataset, consent that permits the deposit, and a named person responsible for it. |
Technical and informatics partners
Academic groups, nonprofit data teams, and consultants who do harmonization, mapping, and pipeline work.
| What they give you | Common data element mapping, common data model conversion, quality assessment, and honest scoping. |
|---|---|
| When to approach | Stage 3 onward, or earlier, for an hour of advice that changes a design decision. |
| What they will ask for | A clear question, sample data, and a decision-maker who can answer questions during the work. |
Precompetitive and regulatory consortia
Collaborations where sponsors, regulators, academics, and communities build shared infrastructure that no single party would fund alone.
| What they give you | Standards, shared control-arm data, regulatory dialogue, and credibility you cannot buy. |
|---|---|
| When to approach | Stage 4–5, or whenever your condition area is the subject of one and you can get a seat. |
| What they will ask for | Sustained participation. These are multi-year commitments, not transactions. |
Registry platforms and vendors
Commercial and academic platforms that host the collection instrument and, sometimes, the record acquisition.
| What they give you | A working system without engineering staff. |
|---|---|
| When to approach | After the question, the asset map, and the self-assessment. Not before. |
| What they will ask for | A contract. Read the ownership and exit terms first, see the vendor section of the toolkit. |
Funders
Foundations, government programs, and industry, each with different tolerance for infrastructure rather than discovery.
| What they give you | Money, and a deadline that forces decisions. |
|---|---|
| When to approach | Whenever you can describe what the money buys in one sentence. |
| What they will ask for | Evidence that the work will outlast the grant. This is where the maturity model earns its keep. |
Standards bodies and ontology maintainers
The groups that publish the specifications and vocabularies everything else depends on.
| What they give you | Free, citable specifications and, often, a working group you can join. |
|---|---|
| When to approach | Read them at any stage. Participate at stage 4–5. |
| What they will ask for | Nothing to read. Sustained volunteer effort to participate. |
The sequence that tends to work
- Join a peer network before you need anything. The value is almost entirely in relationships that exist before the crisis.
- Talk to a technical partner while your design is still soft. An hour of advice before you commit saves a year of remediation after.
- Ask a repository what they would need, even if you are years from depositing. Their answer is a free specification for your data dictionary.
- Approach funders with the sustainability answer already written. They will ask what happens when the grant ends.
- Engage a platform last. By then you know what to ask for.