Patient-led mitochondrial discovery
Mito Discovery Alliance
Helping people affected by mitochondrial disease connect, participate in research, and stay in control.
Learn about mitochondrial disease research, find programs that fit your needs, and decide how you want to participate. You can join MDA for free with basic account information. If you later choose to use Mito Map, your health details and consent choices stay private there.
Paid participation
Some MDA programs may pay patients for eligible participation.
Eligible activities can earn participation credits. Those credits may lead to a Patient Success payment if the program has funds available and approves the payment. Eligibility, program rules, and review requirements apply; payment is not guaranteed.
Participation credits track eligible activities you complete. They are not cash, equity, tokens, or a promise of payment. Current rules apply consistently within a program, but credit amounts, eligible activities, maximums, goals, timelines, and related rules may change as program needs evolve.
Patient programs
15 All Mito plus disease-specific paths
Potential participants
5,930 Across open and planning programs
Expected active
3,635 Estimated engaged cohort
Funding goal
$90,000,000 Combined patient program goal
Planning-stage programs
9 Interest paths being prepared
Planning goal / participant
$15,177 Program-level estimate—not participant compensation
Open opportunities
6 Dynamic consent required
A patient-centered discovery loop
Your participation can help create breakthroughs—and patients share in the value.
Private patient data stays protected. Researchers receive only the approved information they need, helping discoveries move toward new drugs, therapies, and companies. When those efforts succeed, patients can be compensated under clear program rules.
See how it works
Compensation depends on the published rules and successful outcomes for each program; it is not guaranteed.
After you join
Add private health details only when they are useful to you.
Your MDA account begins with basic information. If you later use Mito Map, you can privately organize symptoms, diagnoses, treatments, genetic information, appointments, and updates. You decide what to enter, what to share, and which research opportunities to consider. Mito Map can also help you notice missing information and prepare a short summary for a care visit. You can decline any opportunity unless a program clearly states a different requirement before you join.
No records needed to start
Create an account with your name, email, password, and the program that best fits you.
Review one request at a time
See what each research invitation asks before deciding. Where possible, you can change future sharing choices later.
Keep your story current
Update Mito Map when your health changes so you have a clearer timeline for yourself, your care team, and future research.
Get organized
Mito Map can point out information to update, keep reminders together, and show possible study opportunities. The public MDA website does not provide personalized recommendations.
Patient stories
Your experience can help families and researchers.
Patient and caregiver stories can help another family feel less alone and show researchers what matters in daily life. MDA reviews every story and gets your permission before publishing identifying details. Medical records do not belong in the story form.
Start with a short prompt instead of a full essay.
Choose whether MDA may contact you, review the story with you, or publish an anonymous version.
Avoid lab reports, genetic reports, full treatment histories, exact dates of birth, and urgent medical questions.
MDA only shares an approved story on its website or social channels with your permission.
Help others find MDA
Share the page that fits each person's needs.
Help patients, clinicians, researchers, and supporters find the most useful place to begin. Share MDA's public pages—not private health details.
Shareable line: MDA helps people affected by mitochondrial disease find community and research opportunities. Mito Map keeps health information and consent choices private.
Send patients and families to Patients & Families when they want a simple starting point.
Send clinicians to Clinicians when they want the referral path, handout, and source-linked evidence library.
Send stories, event interest, and newsletter signups to Community .
Send updates-only visitors to Newsletter when they want community notes without creating an account.
Send supporters to Partner With Us if they want to review a governed collaboration, or to Donate if they want to help fund the work.
Why come back
Stay up to date with stories, events, and progress.
Get updates through the newsletter without signing in, visit the Impact page to follow MDA's progress, and update Mito Map when your health information changes. Before a care visit, bring a current summary and your most important questions.
Stories: new reviewed stories and community notes.
Events: listening sessions, webinars, and other community dates.
Impact: short progress notes and milestone updates.
Mito Map: refresh private details there when your story changes.
What we believe
Patients are partners, not data products.
People living with mitochondrial disease understand their daily experience better than anyone. MDA brings patients, caregivers, clinicians, researchers, and industry partners together with clear consent choices and shared rules.
Patient programs
15 Community and disease-specific paths
Potential participants
5,930 Across listed programs
Expected active
3,635 Estimated engaged cohort
Mito disease participants
1,000 All Mito community goal
Comparison volunteers
3,345 Non-mito comparison goal
Patient program planning goal
$90,000,000 Program-level estimate—not participant compensation
Open opportunities
6 Across current programs
Paid participation
Some MDA programs may pay patients for eligible participation.
Eligible activities can earn participation credits. Those credits may lead to a Patient Success payment if the program has funds available and approves the payment. Eligibility, program rules, and review requirements apply; payment is not guaranteed.
open
All Mitochondrial Disease Community
Program planning goal $8,875,000 Program-level estimate—not participant compensation
Planning goal / patient $2,043 Planning calculation—not expected pay
Guaranteed study-payment schedule
No guaranteed study payment is currently published.
If a future study offers fixed compensation, its exact dollar amount, required steps, and payment timing will be shown separately in that study's listing and consent materials before you opt in. Program goals and goal-per-participant figures are never compensation amounts.
Open now: this cohort can support current study conversations and member joins.
Program-level planning goal $8,875,000
Planning goal / participant (not compensation) $2,043
Potential participants 4,345
Expected active 2,607
Engagement estimate 60%
With mito 1,000
Without mito 3,345
Max credits/person 4,350
Program credit pool 18,900,750
Community goal 1,000 with mito + 3,345 without mito. Expected active counts estimate how many members may stay engaged over time.
Credit pool estimate 4,345 participants x 4,350 max credits/person. Credits document completed participation activity and may help with eligibility review if a future value-sharing program is approved. Credits are not cash, equity, tokens, or guaranteed payments.
Gradual participation path Members start with joining credit, then earn more as Mito Map summaries, profile completeness, check-ins, opportunity decisions, and reviewed interactions accumulate up to the program maximum.
Create your basic Alliance account. Credits fill gradually as eligible activity is completed.
↓
Connect Mito Map readiness summaries. Credits fill gradually as eligible activity is completed.
↓
Contribute deeper readiness signals. Credits fill gradually as eligible activity is completed.
↓
Help review the program. Credits fill gradually as eligible activity is completed.
Guaranteed study-payment schedule
No guaranteed study payment is currently published.
If a future study offers fixed compensation, its exact dollar amount, required steps, and payment timing will be shown separately in that study's listing and consent materials before you opt in. Program goals and goal-per-participant figures are never compensation amounts.
The program goal and goal-per-participant calculation are program-level planning estimates. They are not participant compensation, expected pay, payment promises, or guaranteed distribution amounts. Goals, participant targets, credits, eligible activities, maximums, timelines, and related rules may change as program needs evolve.
open
Leigh Syndrome Program
Program planning goal $9,000,000 Program-level estimate—not participant compensation
Planning goal / patient $56,250 Planning calculation—not expected pay
Guaranteed study-payment schedule
No guaranteed study payment is currently published.
If a future study offers fixed compensation, its exact dollar amount, required steps, and payment timing will be shown separately in that study's listing and consent materials before you opt in. Program goals and goal-per-participant figures are never compensation amounts.
Open now: this cohort can support current study conversations and member joins.
Program-level planning goal $9,000,000
Planning goal / participant (not compensation) $56,250
Potential participants 160
Expected active 96
Engagement estimate 60%
Max credits/person 1,550
Program credit pool 248,000
Community goal Estimated community size needed for useful research. Expected active counts estimate how many members may stay engaged over time.
Credit pool estimate 160 participants x 1,550 max credits/person. Credits document completed participation activity and may help with eligibility review if a future value-sharing program is approved. Credits are not cash, equity, tokens, or guaranteed payments.
Gradual participation path Members start with joining credit, then earn more as Mito Map summaries, profile completeness, check-ins, opportunity decisions, and reviewed interactions accumulate up to the program maximum.
Join Leigh and connect readiness source. Credits fill gradually as eligible activity is completed.
↓
Complete Leigh care-readiness summary. Credits fill gradually as eligible activity is completed.
↓
Keep Leigh summaries current. Credits fill gradually as eligible activity is completed.
↓
Help prepare Leigh research data. Credits fill gradually as eligible activity is completed.
Guaranteed study-payment schedule
No guaranteed study payment is currently published.
If a future study offers fixed compensation, its exact dollar amount, required steps, and payment timing will be shown separately in that study's listing and consent materials before you opt in. Program goals and goal-per-participant figures are never compensation amounts.
The program goal and goal-per-participant calculation are program-level planning estimates. They are not participant compensation, expected pay, payment promises, or guaranteed distribution amounts. Goals, participant targets, credits, eligible activities, maximums, timelines, and related rules may change as program needs evolve.
open
MELAS / m.3243A>G Program
Program planning goal $16,000,000 Program-level estimate—not participant compensation
Planning goal / patient $100,000 Planning calculation—not expected pay
Guaranteed study-payment schedule
No guaranteed study payment is currently published.
If a future study offers fixed compensation, its exact dollar amount, required steps, and payment timing will be shown separately in that study's listing and consent materials before you opt in. Program goals and goal-per-participant figures are never compensation amounts.
Open now: this cohort can support current study conversations and member joins.
Program-level planning goal $16,000,000
Planning goal / participant (not compensation) $100,000
Potential participants 160
Expected active 96
Engagement estimate 60%
Max credits/person 1,590
Program credit pool 254,400
Community goal Estimated community size needed for useful research. Expected active counts estimate how many members may stay engaged over time.
Credit pool estimate 160 participants x 1,590 max credits/person. Credits document completed participation activity and may help with eligibility review if a future value-sharing program is approved. Credits are not cash, equity, tokens, or guaranteed payments.
Gradual participation path Members start with joining credit, then earn more as Mito Map summaries, profile completeness, check-ins, opportunity decisions, and reviewed interactions accumulate up to the program maximum.
Join MELAS and start readiness updates. Credits fill gradually as eligible activity is completed.
↓
Complete m.3243A>G readiness summary. Credits fill gradually as eligible activity is completed.
↓
Keep monthly MELAS summaries current. Credits fill gradually as eligible activity is completed.
↓
Help prepare MELAS research data. Credits fill gradually as eligible activity is completed.
Guaranteed study-payment schedule
No guaranteed study payment is currently published.
If a future study offers fixed compensation, its exact dollar amount, required steps, and payment timing will be shown separately in that study's listing and consent materials before you opt in. Program goals and goal-per-participant figures are never compensation amounts.
The program goal and goal-per-participant calculation are program-level planning estimates. They are not participant compensation, expected pay, payment promises, or guaranteed distribution amounts. Goals, participant targets, credits, eligible activities, maximums, timelines, and related rules may change as program needs evolve.
open
OPA1 Discovery Program
Program planning goal $6,750,000 Program-level estimate—not participant compensation
Planning goal / patient $54,000 Planning calculation—not expected pay
Guaranteed study-payment schedule
No guaranteed study payment is currently published.
If a future study offers fixed compensation, its exact dollar amount, required steps, and payment timing will be shown separately in that study's listing and consent materials before you opt in. Program goals and goal-per-participant figures are never compensation amounts.
Open now: this cohort can support current study conversations and member joins.
Program-level planning goal $6,750,000
Planning goal / participant (not compensation) $54,000
Potential participants 125
Expected active 75
Engagement estimate 60%
Max credits/person 1,150
Program credit pool 143,750
Community goal Estimated community size needed for useful research. Expected active counts estimate how many members may stay engaged over time.
Credit pool estimate 125 participants x 1,150 max credits/person. Credits document completed participation activity and may help with eligibility review if a future value-sharing program is approved. Credits are not cash, equity, tokens, or guaranteed payments.
Gradual participation path Members start with joining credit, then earn more as Mito Map summaries, profile completeness, check-ins, opportunity decisions, and reviewed interactions accumulate up to the program maximum.
Join OPA1 and start vision updates. Credits fill gradually as eligible activity is completed.
↓
Complete OPA1 readiness summary. Credits fill gradually as eligible activity is completed.
↓
Keep OPA1 summaries current. Credits fill gradually as eligible activity is completed.
↓
Help prepare OPA1 research data. Credits fill gradually as eligible activity is completed.
Guaranteed study-payment schedule
No guaranteed study payment is currently published.
If a future study offers fixed compensation, its exact dollar amount, required steps, and payment timing will be shown separately in that study's listing and consent materials before you opt in. Program goals and goal-per-participant figures are never compensation amounts.
The program goal and goal-per-participant calculation are program-level planning estimates. They are not participant compensation, expected pay, payment promises, or guaranteed distribution amounts. Goals, participant targets, credits, eligible activities, maximums, timelines, and related rules may change as program needs evolve.
open
POLG Discovery Program
Program planning goal $5,625,000 Program-level estimate—not participant compensation
Planning goal / patient $45,000 Planning calculation—not expected pay
Guaranteed study-payment schedule
No guaranteed study payment is currently published.
If a future study offers fixed compensation, its exact dollar amount, required steps, and payment timing will be shown separately in that study's listing and consent materials before you opt in. Program goals and goal-per-participant figures are never compensation amounts.
Open now: this cohort can support current study conversations and member joins.
Program-level planning goal $5,625,000
Planning goal / participant (not compensation) $45,000
Potential participants 125
Expected active 75
Engagement estimate 60%
Max credits/person 1,280
Program credit pool 160,000
Community goal Estimated community size needed for useful research. Expected active counts estimate how many members may stay engaged over time.
Credit pool estimate 125 participants x 1,280 max credits/person. Credits document completed participation activity and may help with eligibility review if a future value-sharing program is approved. Credits are not cash, equity, tokens, or guaranteed payments.
Gradual participation path Members start with joining credit, then earn more as Mito Map summaries, profile completeness, check-ins, opportunity decisions, and reviewed interactions accumulate up to the program maximum.
Join POLG and confirm readiness source. Credits fill gradually as eligible activity is completed.
↓
Complete POLG readiness summary. Credits fill gradually as eligible activity is completed.
↓
Keep POLG summaries current. Credits fill gradually as eligible activity is completed.
↓
Help prepare POLG research data. Credits fill gradually as eligible activity is completed.
Guaranteed study-payment schedule
No guaranteed study payment is currently published.
If a future study offers fixed compensation, its exact dollar amount, required steps, and payment timing will be shown separately in that study's listing and consent materials before you opt in. Program goals and goal-per-participant figures are never compensation amounts.
The program goal and goal-per-participant calculation are program-level planning estimates. They are not participant compensation, expected pay, payment promises, or guaranteed distribution amounts. Goals, participant targets, credits, eligible activities, maximums, timelines, and related rules may change as program needs evolve.
open
TWNK Discovery Program
Program planning goal $3,750,000 Program-level estimate—not participant compensation
Planning goal / patient $44,118 Planning calculation—not expected pay
Guaranteed study-payment schedule
No guaranteed study payment is currently published.
If a future study offers fixed compensation, its exact dollar amount, required steps, and payment timing will be shown separately in that study's listing and consent materials before you opt in. Program goals and goal-per-participant figures are never compensation amounts.
Open now: this cohort can support current study conversations and member joins.
Program-level planning goal $3,750,000
Planning goal / participant (not compensation) $44,118
Potential participants 85
Expected active 51
Engagement estimate 60%
Max credits/person 950
Program credit pool 80,750
Community goal Estimated community size needed for useful research. Expected active counts estimate how many members may stay engaged over time.
Credit pool estimate 85 participants x 950 max credits/person. Credits document completed participation activity and may help with eligibility review if a future value-sharing program is approved. Credits are not cash, equity, tokens, or guaranteed payments.
Gradual participation path Members start with joining credit, then earn more as Mito Map summaries, profile completeness, check-ins, opportunity decisions, and reviewed interactions accumulate up to the program maximum.
Join TWNK and start priority updates. Credits fill gradually as eligible activity is completed.
↓
Complete TWNK readiness summary. Credits fill gradually as eligible activity is completed.
↓
Keep TWNK summaries current. Credits fill gradually as eligible activity is completed.
↓
Help prepare TWNK research data. Credits fill gradually as eligible activity is completed.
Guaranteed study-payment schedule
No guaranteed study payment is currently published.
If a future study offers fixed compensation, its exact dollar amount, required steps, and payment timing will be shown separately in that study's listing and consent materials before you opt in. Program goals and goal-per-participant figures are never compensation amounts.
The program goal and goal-per-participant calculation are program-level planning estimates. They are not participant compensation, expected pay, payment promises, or guaranteed distribution amounts. Goals, participant targets, credits, eligible activities, maximums, timelines, and related rules may change as program needs evolve.
planning
Cancer and Cancer Survivorship Program
Current funded balance $0 No speculative dollar goal is published
Future value goal Undetermined Subject to governance review
Guaranteed study-payment schedule
No guaranteed study payment is currently published.
If a future study offers fixed compensation, its exact dollar amount, required steps, and payment timing will be shown separately in that study's listing and consent materials before you opt in. Program goals and goal-per-participant figures are never compensation amounts.
Planning stage: this cohort is for shaping a future study or disease program before outreach starts.
Current funded balance $0
Current qualifying value $0
Future value goal Undetermined
Initial planned participants 50
Minimum analyzable participants 40
Current enrollment 0
Recruitment Not recruiting
Community goal Estimated community size needed for useful research. Expected active counts estimate how many members may stay engaged over time.
Credit pool estimate 50 participants x 0 max credits/person. Credits document completed participation activity and may help with eligibility review if a future value-sharing program is approved. Credits are not cash, equity, tokens, or guaranteed payments.
Guaranteed study-payment schedule
No guaranteed study payment is currently published.
If a future study offers fixed compensation, its exact dollar amount, required steps, and payment timing will be shown separately in that study's listing and consent materials before you opt in. Program goals and goal-per-participant figures are never compensation amounts.
The program goal and goal-per-participant calculation are program-level planning estimates. They are not participant compensation, expected pay, payment promises, or guaranteed distribution amounts. Goals, participant targets, credits, eligible activities, maximums, timelines, and related rules may change as program needs evolve.
planning
LHON / Mitochondrial Optic Neuropathy Program
Program planning goal $8,000,000 Program-level estimate—not participant compensation
Planning goal / patient $44,444 Planning calculation—not expected pay
Guaranteed study-payment schedule
No guaranteed study payment is currently published.
If a future study offers fixed compensation, its exact dollar amount, required steps, and payment timing will be shown separately in that study's listing and consent materials before you opt in. Program goals and goal-per-participant figures are never compensation amounts.
Planning stage: this cohort is for shaping a future study or disease program before outreach starts.
Program-level planning goal $8,000,000
Planning goal / participant (not compensation) $44,444
Potential participants 180
Expected active 117
Engagement estimate 65%
Max credits/person 1,150
Program credit pool 207,000
Community goal Estimated community size needed for useful research. Expected active counts estimate how many members may stay engaged over time.
Credit pool estimate 180 participants x 1,150 max credits/person. Credits document completed participation activity and may help with eligibility review if a future value-sharing program is approved. Credits are not cash, equity, tokens, or guaranteed payments.
Gradual participation path Members start with joining credit, then earn more as Mito Map summaries, profile completeness, check-ins, opportunity decisions, and reviewed interactions accumulate up to the program maximum.
Join LHON and confirm readiness source. Credits fill gradually as eligible activity is completed.
↓
Complete optic neuropathy readiness summary. Credits fill gradually as eligible activity is completed.
↓
Keep LHON summaries current. Credits fill gradually as eligible activity is completed.
↓
Help prepare LHON research data. Credits fill gradually as eligible activity is completed.
Guaranteed study-payment schedule
No guaranteed study payment is currently published.
If a future study offers fixed compensation, its exact dollar amount, required steps, and payment timing will be shown separately in that study's listing and consent materials before you opt in. Program goals and goal-per-participant figures are never compensation amounts.
The program goal and goal-per-participant calculation are program-level planning estimates. They are not participant compensation, expected pay, payment promises, or guaranteed distribution amounts. Goals, participant targets, credits, eligible activities, maximums, timelines, and related rules may change as program needs evolve.
planning
Lyme Disease and Persistent Symptoms Program
Current funded balance $0 No speculative dollar goal is published
Future value goal Undetermined Subject to governance review
Guaranteed study-payment schedule
No guaranteed study payment is currently published.
If a future study offers fixed compensation, its exact dollar amount, required steps, and payment timing will be shown separately in that study's listing and consent materials before you opt in. Program goals and goal-per-participant figures are never compensation amounts.
Planning stage: this cohort is for shaping a future study or disease program before outreach starts.
Current funded balance $0
Current qualifying value $0
Future value goal Undetermined
Initial planned participants 50
Minimum analyzable participants 40
Current enrollment 0
Recruitment Not recruiting
Community goal Estimated community size needed for useful research. Expected active counts estimate how many members may stay engaged over time.
Credit pool estimate 50 participants x 0 max credits/person. Credits document completed participation activity and may help with eligibility review if a future value-sharing program is approved. Credits are not cash, equity, tokens, or guaranteed payments.
Guaranteed study-payment schedule
No guaranteed study payment is currently published.
If a future study offers fixed compensation, its exact dollar amount, required steps, and payment timing will be shown separately in that study's listing and consent materials before you opt in. Program goals and goal-per-participant figures are never compensation amounts.
The program goal and goal-per-participant calculation are program-level planning estimates. They are not participant compensation, expected pay, payment promises, or guaranteed distribution amounts. Goals, participant targets, credits, eligible activities, maximums, timelines, and related rules may change as program needs evolve.
planning
m.3243A>G Multisystem / MIDD Program
Program planning goal $14,000,000 Program-level estimate—not participant compensation
Planning goal / patient $58,333 Planning calculation—not expected pay
Guaranteed study-payment schedule
No guaranteed study payment is currently published.
If a future study offers fixed compensation, its exact dollar amount, required steps, and payment timing will be shown separately in that study's listing and consent materials before you opt in. Program goals and goal-per-participant figures are never compensation amounts.
Planning stage: this cohort is for shaping a future study or disease program before outreach starts.
Program-level planning goal $14,000,000
Planning goal / participant (not compensation) $58,333
Potential participants 240
Expected active 156
Engagement estimate 65%
Max credits/person 1,590
Program credit pool 381,600
Community goal Estimated community size needed for useful research. Expected active counts estimate how many members may stay engaged over time.
Credit pool estimate 240 participants x 1,590 max credits/person. Credits document completed participation activity and may help with eligibility review if a future value-sharing program is approved. Credits are not cash, equity, tokens, or guaranteed payments.
Gradual participation path Members start with joining credit, then earn more as Mito Map summaries, profile completeness, check-ins, opportunity decisions, and reviewed interactions accumulate up to the program maximum.
Join m.3243A>G multisystem program. Credits fill gradually as eligible activity is completed.
↓
Complete m.3243A>G multisystem readiness summary. Credits fill gradually as eligible activity is completed.
↓
Keep m.3243A>G summaries current. Credits fill gradually as eligible activity is completed.
↓
Help prepare m.3243A>G research data. Credits fill gradually as eligible activity is completed.
Guaranteed study-payment schedule
No guaranteed study payment is currently published.
If a future study offers fixed compensation, its exact dollar amount, required steps, and payment timing will be shown separately in that study's listing and consent materials before you opt in. Program goals and goal-per-participant figures are never compensation amounts.
The program goal and goal-per-participant calculation are program-level planning estimates. They are not participant compensation, expected pay, payment promises, or guaranteed distribution amounts. Goals, participant targets, credits, eligible activities, maximums, timelines, and related rules may change as program needs evolve.
planning
MERRF / m.8344A>G Program
Program planning goal $5,000,000 Program-level estimate—not participant compensation
Planning goal / patient $55,556 Planning calculation—not expected pay
Guaranteed study-payment schedule
No guaranteed study payment is currently published.
If a future study offers fixed compensation, its exact dollar amount, required steps, and payment timing will be shown separately in that study's listing and consent materials before you opt in. Program goals and goal-per-participant figures are never compensation amounts.
Planning stage: this cohort is for shaping a future study or disease program before outreach starts.
Program-level planning goal $5,000,000
Planning goal / participant (not compensation) $55,556
Potential participants 90
Expected active 59
Engagement estimate 65%
Max credits/person 1,350
Program credit pool 121,500
Community goal Estimated community size needed for useful research. Expected active counts estimate how many members may stay engaged over time.
Credit pool estimate 90 participants x 1,350 max credits/person. Credits document completed participation activity and may help with eligibility review if a future value-sharing program is approved. Credits are not cash, equity, tokens, or guaranteed payments.
Gradual participation path Members start with joining credit, then earn more as Mito Map summaries, profile completeness, check-ins, opportunity decisions, and reviewed interactions accumulate up to the program maximum.
Join MERRF and confirm readiness source. Credits fill gradually as eligible activity is completed.
↓
Complete MERRF readiness summary. Credits fill gradually as eligible activity is completed.
↓
Keep MERRF summaries current. Credits fill gradually as eligible activity is completed.
↓
Help prepare MERRF research data. Credits fill gradually as eligible activity is completed.
Guaranteed study-payment schedule
No guaranteed study payment is currently published.
If a future study offers fixed compensation, its exact dollar amount, required steps, and payment timing will be shown separately in that study's listing and consent materials before you opt in. Program goals and goal-per-participant figures are never compensation amounts.
The program goal and goal-per-participant calculation are program-level planning estimates. They are not participant compensation, expected pay, payment promises, or guaranteed distribution amounts. Goals, participant targets, credits, eligible activities, maximums, timelines, and related rules may change as program needs evolve.
planning
MT-ATP6 / NARP / Leigh Spectrum Program
Program planning goal $6,000,000 Program-level estimate—not participant compensation
Planning goal / patient $60,000 Planning calculation—not expected pay
Guaranteed study-payment schedule
No guaranteed study payment is currently published.
If a future study offers fixed compensation, its exact dollar amount, required steps, and payment timing will be shown separately in that study's listing and consent materials before you opt in. Program goals and goal-per-participant figures are never compensation amounts.
Planning stage: this cohort is for shaping a future study or disease program before outreach starts.
Program-level planning goal $6,000,000
Planning goal / participant (not compensation) $60,000
Potential participants 100
Expected active 65
Engagement estimate 65%
Max credits/person 1,550
Program credit pool 155,000
Community goal Estimated community size needed for useful research. Expected active counts estimate how many members may stay engaged over time.
Credit pool estimate 100 participants x 1,550 max credits/person. Credits document completed participation activity and may help with eligibility review if a future value-sharing program is approved. Credits are not cash, equity, tokens, or guaranteed payments.
Gradual participation path Members start with joining credit, then earn more as Mito Map summaries, profile completeness, check-ins, opportunity decisions, and reviewed interactions accumulate up to the program maximum.
Join MT-ATP6 and NARP spectrum program. Credits fill gradually as eligible activity is completed.
↓
Complete MT-ATP6 spectrum readiness summary. Credits fill gradually as eligible activity is completed.
↓
Keep MT-ATP6 summaries current. Credits fill gradually as eligible activity is completed.
↓
Help prepare MT-ATP6 research data. Credits fill gradually as eligible activity is completed.
Guaranteed study-payment schedule
No guaranteed study payment is currently published.
If a future study offers fixed compensation, its exact dollar amount, required steps, and payment timing will be shown separately in that study's listing and consent materials before you opt in. Program goals and goal-per-participant figures are never compensation amounts.
The program goal and goal-per-participant calculation are program-level planning estimates. They are not participant compensation, expected pay, payment promises, or guaranteed distribution amounts. Goals, participant targets, credits, eligible activities, maximums, timelines, and related rules may change as program needs evolve.
planning
Neuromuscular and Persistent Energy-Limiting Conditions Program
Current funded balance $0 No speculative dollar goal is published
Future value goal Undetermined Subject to governance review
Guaranteed study-payment schedule
No guaranteed study payment is currently published.
If a future study offers fixed compensation, its exact dollar amount, required steps, and payment timing will be shown separately in that study's listing and consent materials before you opt in. Program goals and goal-per-participant figures are never compensation amounts.
Planning stage: this cohort is for shaping a future study or disease program before outreach starts.
Current funded balance $0
Current qualifying value $0
Future value goal Undetermined
Initial planned participants 50
Minimum analyzable participants 40
Current enrollment 0
Recruitment Not recruiting
Community goal Estimated community size needed for useful research. Expected active counts estimate how many members may stay engaged over time.
Credit pool estimate 50 participants x 0 max credits/person. Credits document completed participation activity and may help with eligibility review if a future value-sharing program is approved. Credits are not cash, equity, tokens, or guaranteed payments.
Guaranteed study-payment schedule
No guaranteed study payment is currently published.
If a future study offers fixed compensation, its exact dollar amount, required steps, and payment timing will be shown separately in that study's listing and consent materials before you opt in. Program goals and goal-per-participant figures are never compensation amounts.
The program goal and goal-per-participant calculation are program-level planning estimates. They are not participant compensation, expected pay, payment promises, or guaranteed distribution amounts. Goals, participant targets, credits, eligible activities, maximums, timelines, and related rules may change as program needs evolve.
planning
Post-Infectious and Autonomic Illness Program
Current funded balance $0 No speculative dollar goal is published
Future value goal Undetermined Subject to governance review
Guaranteed study-payment schedule
No guaranteed study payment is currently published.
If a future study offers fixed compensation, its exact dollar amount, required steps, and payment timing will be shown separately in that study's listing and consent materials before you opt in. Program goals and goal-per-participant figures are never compensation amounts.
Planning stage: this cohort is for shaping a future study or disease program before outreach starts.
Current funded balance $0
Current qualifying value $0
Future value goal Undetermined
Initial planned participants 50
Minimum analyzable participants 40
Current enrollment 0
Recruitment Not recruiting
Community goal Estimated community size needed for useful research. Expected active counts estimate how many members may stay engaged over time.
Credit pool estimate 50 participants x 0 max credits/person. Credits document completed participation activity and may help with eligibility review if a future value-sharing program is approved. Credits are not cash, equity, tokens, or guaranteed payments.
Guaranteed study-payment schedule
No guaranteed study payment is currently published.
If a future study offers fixed compensation, its exact dollar amount, required steps, and payment timing will be shown separately in that study's listing and consent materials before you opt in. Program goals and goal-per-participant figures are never compensation amounts.
The program goal and goal-per-participant calculation are program-level planning estimates. They are not participant compensation, expected pay, payment promises, or guaranteed distribution amounts. Goals, participant targets, credits, eligible activities, maximums, timelines, and related rules may change as program needs evolve.
planning
Single Large-Scale mtDNA Deletion Program
Program planning goal $7,000,000 Program-level estimate—not participant compensation
Planning goal / patient $58,333 Planning calculation—not expected pay
Guaranteed study-payment schedule
No guaranteed study payment is currently published.
If a future study offers fixed compensation, its exact dollar amount, required steps, and payment timing will be shown separately in that study's listing and consent materials before you opt in. Program goals and goal-per-participant figures are never compensation amounts.
Planning stage: this cohort is for shaping a future study or disease program before outreach starts.
Program-level planning goal $7,000,000
Planning goal / participant (not compensation) $58,333
Potential participants 120
Expected active 78
Engagement estimate 65%
Max credits/person 1,550
Program credit pool 186,000
Community goal Estimated community size needed for useful research. Expected active counts estimate how many members may stay engaged over time.
Credit pool estimate 120 participants x 1,550 max credits/person. Credits document completed participation activity and may help with eligibility review if a future value-sharing program is approved. Credits are not cash, equity, tokens, or guaranteed payments.
Gradual participation path Members start with joining credit, then earn more as Mito Map summaries, profile completeness, check-ins, opportunity decisions, and reviewed interactions accumulate up to the program maximum.
Join mtDNA deletion program. Credits fill gradually as eligible activity is completed.
↓
Complete deletion syndrome readiness summary. Credits fill gradually as eligible activity is completed.
↓
Keep deletion syndrome summaries current. Credits fill gradually as eligible activity is completed.
↓
Help prepare deletion syndrome research data. Credits fill gradually as eligible activity is completed.
Guaranteed study-payment schedule
No guaranteed study payment is currently published.
If a future study offers fixed compensation, its exact dollar amount, required steps, and payment timing will be shown separately in that study's listing and consent materials before you opt in. Program goals and goal-per-participant figures are never compensation amounts.
The program goal and goal-per-participant calculation are program-level planning estimates. They are not participant compensation, expected pay, payment promises, or guaranteed distribution amounts. Goals, participant targets, credits, eligible activities, maximums, timelines, and related rules may change as program needs evolve.
Research Impact Program
Research should produce value the community can see.
The Research Impact Program recognizes researchers who use consented information responsibly and share useful findings in plain language. This work may inform therapy development, but it cannot guarantee that a therapy will be approved.
Researcher goal
$22.5M 20% of the combined program goal
Program type
Researcher Separate from patient participation pools
Supporting therapy development
Better evidence can help researchers and sponsors make better decisions.
Patient participation
Patients and families choose whether to join, what to share, and when to refresh their history. That steady participation is the first step in building a stronger evidence picture over time.
Consented summaries
Selected summaries, not raw records, help researchers learn while respecting privacy boundaries.
Group-level learning
Aggregate patterns can show whether a question is worth studying and where more information is needed.
Research collaboration
Researchers must agree on the question, the data needed, the patient burden, and the return of value before approved work moves forward.
Sponsor review
Sponsors can review approved summaries and notes while private patient access remains protected.
Better therapy development
When those steps line up, research teams can review the evidence path more clearly and make better therapy-development decisions. That may help more candidates move through review over time, but MDA does not claim or guarantee approval.
MDA can support evidence gathering, research collaboration, and sponsor review. It does not claim credit for any therapy approval or guarantee approval, eligibility, or clinical benefit.
Mito Map integration
Share selected summaries without entering the same information twice. Mito Map is where members track detailed health information and manage consent. With your permission, it can share selected summaries with MDA—such as whether your profile is complete, when it was updated, and your participation history—without sending every record. Related tools such as Mito Match and Precision Mito support the wider mitochondrial disease research community.
