MISHA Foundation

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Patient Registry

The data infrastructure for any future clinical trial readiness in STRC / DFNB16 cohort. Modeled on the EveryLife Foundation patient-registry blueprint and the RARE-X federated-registry pattern.

Mandate

  • Operate a STRC / DFNB16 patient registry (initial) — extensible to other rare hearing-genetics cohorts later
  • Family-controlled records — patients own their data, consent per use
  • IRB-approved
  • Natural history data collection (audiograms, imaging, longitudinal hearing trajectory)
  • Federate with RARE-X for cross-condition discoverability

Stack (target)

  • RARE-X integration for federated registry layer
  • Custom MISHA front-end (later) for STRC-specific intake form
  • IRB: pursue WCG IRB or Advarra (US-based) for first cohort, HK IRB once headcount-eligible

Active projects

  • index — Year 1 priority

Year 1 KRs

  • KR1: RARE-X integration agreement signed (Month 6)
  • KR2: 5+ STRC families enrolled (Month 9)
  • KR3: IRB approval secured (Month 9)

Privacy & data protection

  • Data Protection Policy → governance/policies/data-protection.md
  • All registry-derived data files are _private: true until aggregate-and-anonymized
  • Patient PII never lands in this vault — registry data lives in RARE-X / dedicated infrastructure. This vault holds only operational metadata.

Connections

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