Which of these you need depends on what you are collecting
Two different kinds of data
Survey & participant-reported data
What a person tells you directly: enrollment questions, survey modules, quality-of-life instruments, treatments they report taking. You design it, you own the instrument, and the person is the source.
Sometimes called patient-reported outcomes, or PROs.
Electronic health record (EHR) data
What clinicians recorded during care: diagnoses, medications, lab results, visits, clinical notes. You do not design it and you cannot change it. It arrives from a health system, and getting it is a separate project with its own cost, consent, and technical work.
Also called health records, clinical data, or real-world data.
Most registries need both, and they are not interchangeable. Survey data tells you what daily life is like and what someone believes happened. EHR data tells you what was documented, coded, and billed. Where they disagree, that disagreement is often the finding.
The vendor tools cover both, but keep the two conversations separate on the call. Platform pricing and records pricing are different products with different units.
Registry vendor comparison worksheet
Forty-plus questions across six sections, a scoring sheet that totals automatically across four vendors, and a meeting log. Sections 1–4 cover the registry platform, features, privacy, integrations, data access. Section 5 covers electronic health record data specifically and can be skipped entirely if you are only collecting survey data.
Registry vendor meeting template
Fill in the bracketed placeholders before the call so the vendor demos what you actually need. Covers who you are, your data profile, ranked use cases, current state, must-haves versus nice-to-haves, technical and compliance requirements, your data ownership position, budget and timeline, your questions, and a post-meeting scorecard.
Data asset inventory worksheet
The fuller version of the asset & evidence map. Includes the questions to ask before marking any cell, a blank worksheet, and a filled-in example. The columns separate registry and natural history data, EHR data, biobank samples, digital and device data, and survey or participant-reported measures, because they are different assets that answer different questions.
Data analysis request form
A template for what a requester must supply before your data access committee reviews anything: the question, the variables needed, the analysis plan, the team, and the outputs expected. Adapt it, then publish it so requests arrive in a consistent shape.
How to use the vendor set together
- Before the call, fill in the meeting template. The bracketed placeholders are the point; a vendor who knows your ranked use cases demos the right things.
- During the call, work down the comparison worksheet. Say out loud which section you are in, so nobody answers a platform question with a records answer.
- Immediately after, complete the scorecard while your impressions are fresh, and log the meeting on the third sheet.
- After the last vendor, compare totals, then ignore them and ask the real question: which of these could we still work with in three years, when the person who ran this meeting has moved on?
Please read
These are illustrative templates, not legal, regulatory, or procurement advice. Sample language must be reviewed and adapted with your own IRB and legal counsel before real use. They are not affiliated with, endorsed by, or representing any registry, vendor, or institution.