STRC Research

STRC Patient Registry Tech Stack

2 min read

STRC Patient Registry — Tech Stack Decision

Chosen technology stack for the STRC patient registry, which is a core component of the MISHA Foundation patient data collection effort.

Decision: Supabase (NOT REDCap)

Stack: Supabase hosted (Singapore region) + Astro frontend section on strc.egor.lol

Why Supabase

  • SOC2 certified, encrypted at rest
  • Singapore region (close to APAC, HK-compliant enough for MVP)
  • Egor already knows the stack (uses in Touch Grass)
  • Full control over schema and UI
  • Real-time subscriptions for live data views
  • NOT on Synology NAS (compliance nightmare, not appropriate for patient data)

Why NOT REDCap

  • Not truly open source — requires institutional agreement (must be affiliated with a university)
  • PHP + MySQL stack, complex to self-host
  • Designed for academia, overkill for MVP patient registry
  • BUT: “data captured via REDCap” sounds better to grant committees
  • If grant optics matter later: could run REDCap via academic partner (Holt Lab at BCH has REDCap access)

Database Schema (planned)

TablePurpose
patientsDemographics, contact, country
variantsSTRC variants (gene, position, classification)
audiogramsSerial hearing test results over time
family_historySiblings, parents (STRC is recessive, compound het common)
documentsConsented genetic reports, audiograms PDFs

Data Collection Approach

  1. Phase 1: Anonymous survey (no IRB required) — collect variant + audiogram data voluntarily
  2. Phase 2: Full patient registry with IRB — via academic partner (BCH or Fudan)
  3. IRB can be piggybacked on Holt Lab’s existing approval (free, more credible than independent)

Compliance Plan

  • Start anonymous (no PII, no IRB)
  • Add HIPAA/GDPR compliance layer before collecting identifiable data
  • Migrate to RARE-X if academic partnership demands it (RARE-X: free, HIPAA/GDPR, designed for rare disease registries)

Alternative Considered: RARE-X

  • Free platform designed for rare disease patient registries
  • HIPAA and GDPR compliant out of the box
  • Joining RARE-X = credibility signal + data aggregation network
  • Trade-off: less control, subject to RARE-X policies and data access terms
  • Recommendation from Deep Research: use RARE-X for grant-funded phase, Supabase for MVP

Connections

Graph View