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.
Why this exists
Two reasons. So a group planning a registry can see what they would actually be asking of families before they commit to it. And so they know what to make a vendor demonstrate, every screen here is something reasonable to ask to be shown with a test patient.
The survey modules in full Survey
This is the data participants give you directly. You design these instruments, you own them, and they cost nothing to acquire beyond the platform you run them on.
Representative examples chosen to show the format, not a complete or endorsed instrument set. Where a validated instrument exists for what you want to measure, use it, locally written items cannot be compared to anything outside your own registry, and that comparison is usually the point.
Diagnosis & testing
How the diagnosis was reached, and what testing was done.
5 items
Symptom & event history
What happens, how often, and whether that is changing.
5 items
Development & medical history
Background that helps interpret everything else.
4 items
Quality of life
How the condition affects daily life, in the person's own terms.
5 items
Treatments, diet & supplements
What is being taken or tried, including things outside prescriptions.
4 items
How electronic health records reach the registry EHR
A completely separate undertaking from the surveys above
Everything in this section is about acquiring electronic health records, what clinicians documented during care. It is optional, separately consented, technically involved, and usually the largest line in a registry budget. It is also the step most participants do not complete.
A registry that only collects survey data is a real registry. Many never acquire a single clinical record.
The demo above walks through the two participant-directed paths. Three more exist and normally run through a vendor or a separate request rather than a participant login.
HIPAA authorization and third-party retrieval
The participant signs an authorization letting a service track down records across everywhere they have been seen, then return them. Much more comprehensive than a portal path, often delivered as PDFs, and considerably more expensive. Usually runs through a vendor rather than a participant login.
Network exchange
Records matched across participating providers using identity verification, under a nationwide exchange framework. Broad reach in principle. In practice the yield depends on which providers participate and whether the person can clear identity proofing.
Imaging studies and raw recordings
Almost never arrive through any pathway above, only their reports do. These are requested separately from the imaging library and from whichever department holds the raw studies, each with its own form. Sometimes it is still physical media. Budget for this separately, and find out early whether your question needs it.