For researchers
Work with Mito Discovery Alliance on research that can improve life for people affected by mitochondrial disease. We help researchers understand what data may be available, whether a patient group is ready for a study, how to request access while protecting participant privacy, and how to plan reviewed outputs such as a manuscript, abstract, poster, or plain-language update when work is approved. Eligible researchers may also share in future income generated by approved projects, patents, licenses, or new companies.
Researcher guides
The Open Researcher Playbook is for people applying independently. The Institution Playbook is for researchers whose university, hospital, institute, company, sponsor, or employer must participate in approval and contracting.
Two ways to participate
The research opportunity and potential outcome participation are shared. The contracting, IP-clearance, and data-access steps differ.
Institution-sponsored
Use this path when your appointment, lab, funding, equipment, staff, confidential information, or invention policy may touch the project. MDA and the institution agree on data use, Project IP, publications, conflicts, and commercial rights before substantive work begins.
Independent / Open Researcher
Use this path when you can personally accept MDA's terms and assign defined Project IP. Begin with public, synthetic, or bounded work; demonstrate rigor; complete direct contracting and conflict/IP review; and earn greater responsibility.
If an employer, client, sponsor, institution, or technology-transfer office might have rights, disclose that relationship and begin with the institution-sponsored pathway. The independent pathway is not a way around existing obligations.
Data available
Researchers may request data in the categories below. Not every type of data is available for every participant or disease program. Availability depends on what participants have shared, what they have consented to, how complete and current the data is, privacy requirements, and approval of the research request.
Disease-program participation, diagnosis status, symptoms and related conditions, mitochondrial disease subtype, age when symptoms began, shared genetic test summaries, and relevant family history.
Approved summaries of symptoms, medications, care teams, lab results, imaging, hospital stays, healthcare use, and changes over time when that information is available.
Patient-reported outcomes, surveys, measures of daily activity, fatigue or mobility information, caregiver observations, and descriptions of participants' experiences.
Mito Map summaries, daily wearable summaries, digital function tests, completed questionnaires, participation and consent history, and group-level measures that help show whether enough data exists to study a question.
Access depends on the disease program, participant consent, privacy safeguards, and approval of the data request. MDA provides only the data needed for the approved question. Researchers should expect group-level, de-identified, limited, or summary data rather than unrestricted access to raw records.
Research support
Counts showing consent status, disease program, symptom burden, available function, wearable and lab data, follow-up over time, survey completion, and important data gaps.
Starting-point and follow-up data covering symptoms, measured function, responses to activity or other challenges, and disease-program check-ins.
Approved summaries of interventions participants have tried, whether they followed the plan, and any changes in symptoms, energy, function, or wearable measures.
Measures such as grip, sit-to-stand, fatigue before and after activity, hand function, dexterity, balance between sides, recovery, and remaining functional capacity.
Sleep, heart-rate variability, recovery, resting heart rate, activity, steps, and possible links to symptoms or function the next day, when participants have consented.
Groups of related symptoms, affected body systems, disease severity, certainty estimates, and approved variables prepared for analysis.
With participant consent, MDA can help identify potentially eligible groups, match studies to disease programs, and assess interest and readiness for outreach.
Information about the consent used, where the data came from, when it was collected, how it was prepared, what was removed for privacy, and how results will be shared with participants.
Publication path
Say whether the output is a manuscript, abstract, poster, milestone update, or plain-language summary.
Ask for only the data needed to answer the question. Use group-level or summary data when possible.
Explain what can be made public, what must remain protected, and what still needs review.
Decide early how you will cite MDA, update the community, and share understandable results with participants, reviewers, and the public.
What you—the individual researcher—could earn
The named individual researcher earns outcome participation credits for accepted work. Those same credits determine the researcher's portion of any future distribution approved for the applicable research program. The dollar figures below are planning-value targets for the credits—not a separate milestone payment and not an additional award.
For planning, MDA currently illustrates each credit at $10 of potential distribution value. This shows what the credit award is intended to be worth if qualifying income and an approved distribution support it. Credits have no fixed cash value, so the actual amount can be lower, higher, or zero.
Planning-value target: $22,500-$34,500 | reviewed score 45-69
Planning-value target: $35,000-$42,500 | reviewed score 70-85
Planning-value target: $50,000-$100,000 | reviewed score 86-100
How credits are calculated: Moderate and strong outputs target 50 credits for each point in the project's reviewed 100-point score. Priority outputs receive an impact premium, scaling from 5,000 credits at a score of 86 to 10,000 credits at 100. The review considers cohort fit, data minimization, consent and privacy fit, participant burden, return of value to patients, and feasibility. An automated score alone cannot award credits or authorize payment.
Researcher distribution = approved program distribution × your eligible credits ÷ total eligible program credits. For example, if MDA approves a $1 million distribution and the program has 100,000 eligible credits, 5,000 credits would receive $50,000. If the total credits or approved distribution changes, the payment changes too.
Credit opportunities and acceptance criteria must be written down before the work begins.
Credits reward accepted work and stewardship—not a positive result, favorable interpretation, patent, financing, or sponsor-preferred conclusion. Rigorous negative and null results qualify on the same basis.
The same contribution is not counted twice unless the written schedule identifies separate accepted milestones.
Each distribution uses a stated eligibility date. Researchers receive their credit balance, the total eligible program credits used in the calculation, notice of material corrections, and a reasonable appeal path.
MDA may add future credit opportunities and contributors, but does not retroactively reduce credits already earned for accepted work except through a disclosed correction, lawful clawback, or resolved misconduct process.
Approved analyses, manuscripts, patient updates, inventions, licensing support, and company-building milestones can earn credits under the written schedule.
Qualifying income from partnerships, licenses, milestones, royalties, settlements, or realized company value may fund an approved researcher distribution.
Your eligible credits are divided by all eligible program credits on the stated eligibility date. No fixed percentage is promised.
The dollar ranges are planning-value targets for the listed credits, not guaranteed pay, salary, grant funding, ownership, a valuation, money currently owed, or a second payment in addition to the credits. Credits are non-transferable program records and produce payment only if qualifying income exists and MDA approves a distribution. These individual researcher credits are not an institutional grant, lab budget, overhead allowance, or indirect-cost pool. Future credit opportunities may be added, and disclosed rules may address eligibility, expiration, contributor allocation, corrections, and lawful clawbacks. Compensation rewards genuine work, never a favorable result. Separate equity, options, employment, consulting, or legally required inventor economics must be documented independently and are not included in these credit-value targets.
Researcher value
The Research Impact Program can recognize approved data analysis, manuscript work, data-use reporting, and plain-language updates for participants. Researcher rewards are managed separately from any value shared with patients.
The program is still being developed
A planning goal, not money currently available
Possible future researcher awards under a cautious estimate
Possible future researcher awards under a middle estimate
Possible future researcher awards under a high estimate
Planned researcher portion of the combined patient and researcher goals
Eligibility
Work must use Alliance data under the applicable consent, privacy, data-use, and program rules.
Eligible work must provide scientific, clinical, practical, or patient-facing value to mitochondrial disease programs.
Researchers may need to provide a plain-language summary, report how data was used, or take part in a community review.
Any award depends on the status of the work, a compliance review, available qualifying income, and approval under the program rules.
Researcher Value awards are not guaranteed, are not investments, and are not payments currently owed. The figures shown are planning goals based on possible future qualifying income.
How to apply
Choose the institution-sponsored or independent researcher application. Tell us about your role, skills, research area, and a relevant work sample or professional profile, if available.
Describe the question you want to explore, the disease community involved, and the stage of the work.
Explain what data, patient-group information, recruitment support, or input from patients would help.
Include any protocol synopsis, CV, IRB summary, data-use plan, sponsor overview, or proposal document that helps us review fit.
MDA will follow up before approving data access, recruitment support, consent-related work, or participation in the Research Impact Program.