Dynamic consent
Members can opt into or out of specific research and commercial opportunities while consent history remains auditable.
Sponsor: TBD
Purpose: Understand mitochondrial disease progression over time through patient-reported and derived registry summaries.
Data requested: Symptoms, labs, functional data, and wearable summaries where consented.
Time: 15 minutes quarterly
Privacy: coded or de-identified where applicable
Participation credit: +100 contribution credits
Sponsor: Mito Discovery Alliance
Purpose: Help strengthen POLG registry readiness by confirming participation metadata and missing summary categories.
Data requested: Program enrollment, diagnosis summary, and data completeness checklist.
Time: 20 minutes one time
Privacy: Alliance summary data only
Participation credit: +80 contribution credits
Sponsor: Mito Discovery Alliance
Purpose: Share which TWNK-related symptoms, care gaps, and daily-life impacts matter most to families.
Data requested: Patient priorities, lived-experience survey responses, and optional caregiver perspective.
Time: 10 minutes
Privacy: de-identified aggregate reporting
Participation credit: +50 contribution credits
Sponsor: Mito Discovery Alliance
Purpose: Support OPA1 research planning by contributing structured lived-experience summaries.
Data requested: Vision, fatigue, mobility, and quality-of-life survey responses.
Time: 12 minutes
Privacy: de-identified aggregate reporting
Participation credit: +60 contribution credits
Sponsor: Mito Discovery Alliance
Purpose: Contribute recurring check-ins to help researchers understand change over time.
Data requested: Monthly symptom burden, energy, function, and care-utilization summaries.
Time: 15 minutes monthly
Privacy: coded or de-identified where applicable
Participation credit: +90 contribution credits