What you may share
You may choose to share profile details, symptoms, diagnosis information, treatments, labs, genetics, outcomes, experiences, or selected Mito Map summaries.
Transparency
Your information should be handled with clarity, consent, and respect.
If you or someone you love lives with mitochondrial disease, this page explains what participation can mean, what you control, who may use information, and how the Alliance is accountable to families.
What this means for you
The short version, before any policy language.
Who may see it
Depending on the opportunity, information may be kept inside the Alliance, summarized for public reporting, or shared with approved researchers or partners under review.
What you can say no to
You can decline studies, surveys, partner opportunities, or optional data categories and still remain part of the community where program rules allow.
How changes work
Withdrawal and preference changes are honored going forward where feasible, though completed analyses may not always be reversible. Mito Map is where detailed permissions live, so that is the place to change a granular consent choice.
Mito Map is the detailed place for personal profile data, granular permissions, study matching, and consent records. The Alliance website explains the model and shows public accountability.
For patients and clinicians
What to expect before you share anything sensitive.
Patients can read the public explanation first and decide whether to continue.
Clinicians can share MDA without sending charts, lab files, or genetic reports through public forms.
MDA is educational and participation-focused; Mito Map remains the private home for detailed health information, consent, and follow-up.
If a request needs medical care, the clinician stays in charge of diagnosis and treatment.
Our promises
Data can help research without making families feel exposed.
We explain the ask first
Before you decide, you should be able to understand what is being requested, who is asking, and why it may help mitochondrial disease research.
You choose what feels right
Joining the Alliance does not mean saying yes to every future study, survey, or partner request.
We use less when less is enough
Whenever possible, we use totals, summaries, or de-identified information instead of information that points back to one person.
Your information is not a product shelf
The public MDA website is not a place where companies can buy identifiable patient records.
Useful work should come back to the community
Research and partnerships aim to return value through clearer findings, better tools, funding, study access, or patient-friendly updates.
We show our work publicly
We publish plain-language summaries of programs, collaborations, funding targets, and important trust practices so families do not have to guess.
Fair participation
Participation should feel understandable, optional, and reviewable.
Fairness means the same published rulebook applies to the same kind of request. Different request types can have different rules, but people can ask for a human review if a result seems inconsistent.
Credits track effort, not worth
Participation credits are a record of consented activity. They are not cash, equity, tokens, dividends, or a ranking of which patient matters more.
Eligibility is rule-based
If a Patient Success Distribution ever happens, it depends on the program rules, the available qualifying revenue, and the approved eligibility window.
No one is required to participate
Families can read, decline, pause, or return later. Saying no to one request does not reduce membership or future access to the wider community.
Questions are reviewable
If the credit or eligibility logic feels unclear, questions can be raised through governance or support so the team can check the record, compare it against the same published rulebook, and explain the decision.
Researcher awards are separate
Awards for useful, compliant publications are governed separately from patient recognition and depend on publication status, approval, and available qualifying value.
Contribution credits help document completed, consented activity. They do not create a promise of payment, an ownership stake, or a right to future study access. Patient Success Distributions and Researcher Value awards are separate programs and may happen only if qualifying value exists and the relevant program rules approve them.
Model quality
How consented longitudinal data helps models, predictions, and readiness without becoming medical advice.
Better signals, not bigger promises
Repeated consented updates give aggregate models fresher information about what changes over time, but they do not create a diagnosis or a personal forecast for any one person.
Readiness is collective
Cohort readiness checks help researchers see whether a group is complete enough, current enough, and consented enough for a study question or feasibility review.
Recommendations stay bounded
Any future study-match or follow-up prompt should be based on consented summaries and should return a review cue, not a medical recommendation.
Stale data hurts quality
Old or partial records can make pattern detection, prediction checks, and cohort summaries less reliable, which is why current longitudinal data matters.
MDA uses public explanations, aggregate reporting, and reviewed workflows. Any future model or recommendation feature should stay consent-aware, minimize data, and avoid claiming a clinical prediction or personal recommendation for a specific person.
Why transparency helps science
Open participation makes the science easier to design, review, and return.
Better study design
When people can see what is being asked, researchers can narrow the question, cut avoidable burden, and avoid collecting data that does not help answer it.
Cleaner aggregate reporting
Transparent participation makes it easier to publish totals and trends because public, aggregate, and de-identified reporting are separated before anything is shared.
Stronger publications
Reviewed participation and clear provenance make papers, posters, and milestone reports easier to write and easier to trust.
Returned findings
Plain-language updates, milestone notes, and publication summaries can come back to patients and families when results are ready.
Transparency does not guarantee a better result for any one person. It does help the community see how participation becomes better study design, aggregate reporting, publications, and patient-returned findings.
Innovation review
New tools and ventures start with review, not promotion.
When a researcher, clinician, or partner brings a promising idea, MDA first checks fit, burden, privacy, and governance. If the idea still looks useful, it can move into a study, evidence packet, service contract, or other approved collaboration path. A future venture or spinout would only be documented after governance and counsel review.
Use the named disease program when the idea already has a clear cohort.
Use partner intake when the main question is feasibility or a proof packet.
Use research intake when the main goal is study design or publication work.
Keep private records, consent controls, and patient-level workflows in Mito Map.
Current work
Ways the Alliance is helping patients connect to research.
| What is happening | Why it matters | What is shown here | Status |
|---|---|---|---|
| Mito Map connection | Member profile support | Helps members connect selected summaries instead of re-entering everything by hand | Active |
| Mito Match routing | Community support | Helps families find related mitochondrial resources and matching pathways | Active |
| Disease program opportunities | Research participation | 6 open opportunities across 6 program(s) | Open |
| Research Impact Program | Publication support | 0 published outputs recorded | Pre-publication |
| Commercial partnerships | Partner review | 0 commercial revenue events recorded | No active commercial contracts recorded |
When named institutional, research, or commercial collaborators can be disclosed publicly, they are listed here in plain language. If a collaboration is under review or still being negotiated, it stays off this page until the boundaries are clear enough to explain responsibly.
Public collaboration registry
Reviewed activities and data-use boundaries.
If companies are involved
Commercial partnerships are visible and optional.
Some research progress may involve biotech, pharma, diagnostics, digital health, or other partners. The Alliance makes those relationships understandable before asking members to participate.
No back door to your records: Partners do not receive identifiable patient data through the public website or bypass member consent.
You should know when a partner is involved: Partner-supported opportunities are described in plain language before members decide whether to participate.
Commercial work should help patients too: Partnerships support patient value, research progress, community benefit, or transparent funding goals.
No pressure to participate: A commercial opportunity remains optional unless a specific program clearly explains otherwise before enrollment.
If something goes wrong
People deserve a clear response, not silence.
This is a plain-language summary of the response process, not a substitute for legal notices or incident-specific communications.
1. Stop the problem
Limit access, preserve logs, rotate affected credentials if needed, and pause risky activity while the issue is assessed.
2. Find out what happened
Determine what systems or information were involved and whether any identifiable or protected information may be affected.
3. Tell the right people
Notify affected people, partners, regulators, or vendors when required by law, contract, policy, or patient-trust expectations.
4. Fix and learn
Fix the root cause, update controls, and summarize material incidents publicly when appropriate.
A serious incident may be rare, but if it happens the Alliance should explain the scope, what was contained, and what members should do next in plain language.
Who reviews decisions
Patient voice belongs in the trust structure.
The advisory board roster is growing. This section describes the roles MDA includes in governance and review.
Help review plain-language materials, survey burden, accessibility, and whether participation feels respectful.
Help check that research questions are meaningful, careful, and honest about what patient-contributed data can and cannot show.
Checks the purpose, consent path, minimum information needed, privacy protections, and partner boundaries before data is used.
Keeps disease programs, member communication, funding goals, and public reporting organized.
Governance roles
Review roles MDA publishes and maintains.
Patient and caregiver advisory voice
Reviews plain-language materials, burden expectations, accessibility, patient priorities, and community trust concerns.
Research and data-use review
Reviews proposed research uses for purpose, data minimization, consent fit, return of value, and patient burden.
Privacy and security review
Reviews privacy risks, access boundaries, incident response expectations, and safe public reporting practices.
Partnership review
Reviews commercial, institutional, foundation, and advocacy partnerships for patient benefit and conflicts.
Current status
Members
100Patient programs
11All Mito plus disease-specific paths
Potential participants
5,730Across patient programs
Expected active participants
3,724Estimated engaged cohort
Researcher programs
1Research Impact Program
Patient program goal
$40,000,000$90,000,000-$135,000,000 planning range
Goal / participant
$6,981Uses summed program goals
Open opportunities
6Opportunity programs
6Programs with active opportunities
Opportunity sponsors
2Open opportunity credit total
455455 credits across open opportunities
Opportunity responses
22 total responses
Researcher goal
$22,500,00020% of the combined program goal