Evaluate and select the technology platform that best fits your registry's purpose, budget, and long term data needs.
Patient Registries 101 · Dr. Danielle Boyce · EpilepsyLive
Platform decisions are architecture decisions
The platform you choose determines what data you can collect, how it can be structured, whether it can interoperate with EHRs, and how easily data can be exported for analysis.
Evaluate platforms against your scientific requirements, not just their ease of setup.
Purpose built registry platforms
Designed specifically for patient registries.
REDCap (Research Electronic Data Capture)
Widely used in academic research.
Pros: Free (with institutional access), flexible, validated, large user community, good export options Cons: Not designed as a patient portal; requires technical setup; hosting requires an institut…
Key resource: REDCap Consortium
FHIR-native platforms
If EHR integration is a priority, consider platforms built on or natively supporting HL7 FHIR
Firely , FHIR server and tooling
Smile CDR , Enterprise FHIR platform
Microsoft Azure Health Data Services , Cloud FHIR infrastructure
Google Cloud Healthcare API , FHIR R4 compatible cloud storage
These are infrastructure components, not turnkey registry solutions, you'll typically build on top of them.
Data ownership and portability
Who owns the data? (Answer must be: the advocacy organization owns the data, always.)
In what format can data be exported? (Require: CSV, JSON, and ideally FHIR R4)
What is the process for full data export if we change vendors?
Are there any data lock-in provisions?
Security and compliance
What is your SOC 2 Type II certification status?
Are you HIPAA-compliant? Do you sign a Business Associate Agreement (BAA)?
Where are servers located? (Matters for GDPR if collecting international data)
What is your data breach notification policy and history?
Interoperability
Do you support HL7 FHIR R4?
Can participants import their health records via SMART on FHIR / 21st Century Cures Act APIs?
Do you support standard terminologies (SNOMED CT, LOINC, ICD-10, HPO)?
Participant experience
Is there a patient portal with longitudinal data entry?
Can participants view their own data?
Is the interface accessible (WCAG 2.1 AA)?
Does it support mobile?
Research features
Can you define branching logic in questionnaires?
Is there audit trail / version control on data changes?
Does the platform support validated patient-reported outcome instruments (PROMIS, EQ-5D, etc.)?
What analysis tools are built in vs. what requires export?
Pricing model
Is pricing per participant, per site, per year, or by data volume?
What does scaling cost as your registry grows?
Are there costs for data export?
Is there a nonprofit or advocacy organization pricing tier?
Build vs. buy
Some organizations consider building a custom registry.
Custom builds are justified when
Your data architecture is uniquely complex (e.g., multiomics, imaging, biosample tracking)
You have a large technical team and sustained engineering budget
No commercial platform meets your FHIR/interoperability requirements
For most advocacy organizations: Choose an established platform.
Hosted vs. self-hosted
Most advocacy organizations should use hosted/SaaS platforms .
Exception: If you have an academic partner willing to host REDCap, this is a cost-effective and academically credible option.
Checklist
[ ] Listed platform requirements based on registry purpose and data elements
[ ] Confirmed HIPAA BAA is available from shortlisted vendors
[ ] Confirmed data ownership is explicitly assigned to your organization in vendor contracts
[ ] Confirmed full data export capability (format and process)
[ ] Evaluated FHIR support if EHR integration is a priority
[ ] Requested nonprofit/advocacy pricing
Checklist (cont.)
[ ] Verified SOC 2 Type II certification
[ ] Piloted platform with a small test dataset before committing