Total members
Not yet availableMDA member accounts
Impact
See progress without exposing private health records.
This page shows public totals, open opportunities, funding priorities, research updates, and community progress. It does not show names, raw medical records, or individual health details. Transparent participation helps researchers ask better questions, design cleaner studies, compare group patterns more cleanly, publish clearer reports, and return plain-language findings when results are ready.
Why transparency helps science
When people can see the request, researchers can plan the study more clearly.
Clear participation helps researchers ask a better question, choose the right group, and avoid extra burden.
Public, aggregate, and de-identified reporting stay separate so group results are easier to read and compare.
Reviewed participation and clear provenance make publications and milestone reports easier to trust.
Plain-language findings can come back to patients and families when results are ready.
Return for the next snapshot
Come back when you want the latest milestone, event date, or progress note.
Public impact works best when it is easy to check again. Use the newsletter if you want updates without creating an account, and use Mito Map to refresh private details when your story changes.
Milestones: see what changed in the latest public progress note.
Events: find listening sessions and community dates.
Stories: review new prompts and reviewed stories.
Newsletter: get updates without signing in.
Mito Map synced
Not yet availableSelected summaries only
Potential participants
5,730Across current programs
Expected active
3,475Estimated engaged cohort
Patient program goal
$90,000,000Combined multi-year goal
Researcher goal
$22,500,000Separate research impact goal
Symptom entries
Not yet availableAggregate synced summary count
Questionnaires
Not yet availableAggregate synced summary count
Metric dictionary
How to interpret public statistics
Enrolled participants
Distinct MDA member records. Membership is not proof of diagnosis, longitudinal participation, research eligibility, or a clinical outcome.
Represented diagnoses
Distinct self-reported or program-associated diagnosis categories after minimum-cell-size suppression. It is not a prevalence estimate.
Geographic reach
Distinct broad regions represented after privacy suppression. Precise member locations are not published.
Research matches
Reviewed opportunity-to-member matches created under the applicable consent and eligibility workflow; a match is not enrollment.
Consent activity
Recorded opt-in, decline, restriction, expiration, revocation, or withdrawal events. Denominators and time windows must accompany any published rate.
Program outcomes
Completed, validated program milestones reported in aggregate. Planning targets, applications, and invitations are reported separately from outcomes.
Public counts use the smallest appropriate denominator, show a refresh date, and suppress small cells according to the public-metrics privacy policy. Missing data are not treated as negative responses.
How evidence moves
Participation creates real-world evidence only when the work is reviewed, summarized, and returned clearly.
Updates over time
Show public totals and update activity so the community can see whether participation is growing without exposing private records.
Review the question
Use program-level summaries and consent rules to decide which research questions and study designs are worth asking next. Real-world evidence comes from reviewed, aggregate results over time, so these summaries support planning, but they are not proof of clinical benefit.
Return findings
Share reviewed publications, presentations, milestones, and plain-language summaries when results are ready. Public reporting should say what was measured, what the group result means, and what still needs follow-up.
Translate to care conversations
When appropriate, turn aggregate findings into patient-friendly updates and clinician resources that support discussion, education, and better study design without turning them into medical advice.
Therapy development path
Participation, consented summaries, and reviewed collaboration can make the route to better therapies more credible.
When patients and families choose to join, share selected updates, and keep contributing over time, MDA can turn those summaries into aggregate evidence. Researchers can use that evidence to ask better questions, and sponsors can support the reviewed work that helps the field move forward. That still does not guarantee a therapy approval; it only makes the next step easier to justify and review.
Patients and families stay in control of whether they join and what they share.
Mito Map keeps the detailed health record, consent choices, and patient-level follow-up.
MDA publishes aggregate trends, public milestones, and governed collaboration summaries.
Sponsor and partner workflows support research infrastructure, not guaranteed approval.
What the public reporting means
Aggregate outcomes and longitudinal reporting help people trust the signal without turning the site into a patient record.
Aggregate outcomes describe group-level patterns, not individual results or treatment recommendations.
Longitudinal reporting shows how participation, completeness, and follow-up change over time.
Real-world evidence here means consent-aware, population-level learning that can inform future questions and review, not a claim that care has changed.
If a summary is useful in clinic, Mito Map remains the private home for detailed tracking, consent choices, and patient-level follow-up.
Public updates should make clear what was measured, what is still uncertain, and which next step belongs in MDA versus Mito Map.
How to read the numbers
Public impact metrics should be easy to scan and hard to misread.
Aggregate counts
Public numbers show group-level progress, planning capacity, or update activity. They do not show private records, individual outcomes, or treatment advice.
Longitudinal reporting
Repeated updates show how participation changes over time. That makes the public trend easier for clinicians and families to read and gives the aggregate report more context, but it still does not replace clinical judgment or patient-level records.
What to do next
Use the plain-language summary first, then open the source or follow-up note if you need the detail behind the public update. If private tracking or patient-level follow-up is needed, that belongs in Mito Map.
For clinicians
Use the public evidence page as a starting point, then open the original source.
Clinicians and care teams can use these public summaries to decide what to review next, then move to the clinician page for the referral path and handout. When a page cites a guideline or consensus statement, the original source should stay linked and the wording should stay neutral.
Referral path
Start with the clinician page for the light referral workflow and patient handoff.
Open clinician pageQuick-start one-pager
Download the short clinic summary that explains what to share and what to avoid sending.
Download quick-startEvidence library
Review publications, milestones, and plain-language summaries before bringing questions back to clinic.
Open libraryFor patients and caregivers
Use public results to organize questions for your next visit.
Save the part that matters and bring it with your own notes to the next appointment.
Write down what changed, what you want to ask, and whether a Mito Map summary would help keep the story current.
Keep detailed labs, symptoms, and follow-up in Mito Map if you use it; MDA stays on the public, aggregate side.
If a result raises a clinical question, use it as a discussion starter with your care team rather than a treatment instruction.
Sustainability
Durable growth means keeping costs, claims, and commitments smaller than the mission requires today.
Funding should reduce manual work, protect trust, and improve patient value before it adds new surface area.
Public targets are planning tools, not guaranteed revenue or payout promises.
Support should favor repeatable operations, not one-off spend that creates future overhead without clear return to the community.
Partner and donation messaging stay separate so mission support never sounds like commercial access or an investment product.
For partners and funders
See the public proof, then start a governed conversation about partnership, sponsorship, or funding.
Foundations, pharma teams, and clinician groups can use this page to review public progress first, then use Partner With Us for governed collaboration, sponsorship, or service contracts. If you are starting a request, send your role, the disease program, and the smallest useful question so the review can route faster. Use Donate for mission support. Public impact does not include private records or direct member access.
Review governed collaboration
Use this when you need feasibility, sponsored collaboration, or a contract path for a study or program.
Open partnership intakeSupport the work
Use this when you want to fund public reporting, patient resources, or community programs.
See giving optionsFor pharma partners
Early review should answer fit, burden, readiness, and evidence needs.
Use public signals to rule out weak fits before anyone invests in protocol work.
Use readiness summaries to gauge how much follow-up or recruitment work a program might need.
Use reviewed summaries and evidence packets to keep teams aligned on scope, review notes, and approved next steps.
Keep commercial planning focused on aggregate signals and reviewed summaries, not raw records or direct patient access.
Open opportunities
Current ways participation can move research forward.
Mitochondrial Natural History Study
15 minutes quarterly - 100 contribution credits
Check your POLG profile details
20 minutes to start, then periodic refresh - 80 contribution credits
Tell us what matters most for TWNK
10 minutes to start, then periodic refresh - 50 contribution credits
Keep OPA1 vision and fatigue updates current
12 minutes to start, then periodic refresh - 60 contribution credits
MELAS / m.3243A>G Longitudinal Check-In
15 minutes monthly - 90 contribution credits
Share a Leigh syndrome care update
15 minutes per update - 75 contribution credits
Research updates
Publications, presentations, and milestones that explain what was learned.
Program progress framework
Program metrics help show participation, recent updates, data completeness, and research opportunity activity so collaborators can see what is ready for publication without exposing private records.
Patient-prioritized natural history outputs
When published, findings should include plain-language takeaways for the disease community, note the question they answer, and identify which patient priorities shaped the analysis.
Researcher value program planning
Program design keeps patient participation targets separate from researcher-impact metrics so review remains transparent and publication-ready.
Funding priorities
What the next stage needs funded.
These priorities are operating targets, not revenue forecasts or payout promises. They show what support keeps steady work possible.
Patient participation support
$250,000Cover signup help, reminders, member support, and participation records so joining and follow-up stay reliable.
Research program support
$150,000Pay for data checks, secure Mito Map summary sync, and public reporting that stays lean and easy to read.
Patient advisory support
$50,000Pay for listening sessions, accessibility review, plain-language review, and advisor time so feedback stays useful.
Research opportunity support
$300,000Cover sponsor coordination, study setup, opportunity cards, consent review, and returned findings without avoidable overhead.
What these metrics mean
Impact metrics are meant to be useful and honest.
Aggregate counts do not expose private patient records.
Planning targets are not guaranteed funding or payout promises.
Open opportunities still require consent and eligibility review.
Public impact reporting is meant to improve trust, not pressure patients to overshare.