Public participant dashboard
Open registry participation metrics.
This dashboard shows aggregate Alliance participation without exposing member identities or private health data.
No public member identifiers
Disease communities
Participation by program
open
All Mitochondrial Disease Community
The broad Alliance community for people living with any mitochondrial disease or suspected mitochondrial condition.
open
POLG Discovery Program
A patient partnership program focused on POLG-related mitochondrial disease.
open
TWNK Discovery Program
An open patient partnership program focused on TWNK-related mitochondrial disease.
open
OPA1 Discovery Program
An open patient partnership program focused on OPA1-related mitochondrial disease.
open
MELAS / m.3243A>G Program
An open patient partnership program for MELAS and m.3243A>G-related mitochondrial disease.
open
Leigh Syndrome Program
An open patient partnership program for Leigh syndrome and related mitochondrial disease communities.
Open opportunities
Active ways patients can participate
Mitochondrial Natural History Readiness Study
Sponsor: TBD
Estimated effort: 15 minutes quarterly
Contribution credits: +100
Privacy: coded or de-identified where applicable
POLG Registry Completeness Sprint
Sponsor: Mito Discovery Alliance
Estimated effort: 20 minutes one time
Contribution credits: +80
Privacy: Alliance summary data only
TWNK Patient Priorities Survey
Sponsor: Mito Discovery Alliance
Estimated effort: 10 minutes
Contribution credits: +50
Privacy: de-identified aggregate reporting
OPA1 Vision and Fatigue Experience Survey
Sponsor: Mito Discovery Alliance
Estimated effort: 12 minutes
Contribution credits: +60
Privacy: de-identified aggregate reporting
MELAS / m.3243A>G Longitudinal Check-In
Sponsor: Mito Discovery Alliance
Estimated effort: 15 minutes monthly
Contribution credits: +90
Privacy: coded or de-identified where applicable
For members
Your account unlocks a personal dashboard.
After joining, members can access their private dashboard at /dashboard to see program enrollment, Mito Map sync status, contribution score, consent center, research opportunities, impact, and patient success status.