Opportunities available now
6Open for members to review
Research opportunities
Understand each opportunity before you decide.
Every opportunity explains who is asking, what they want to do, what information they need, how much time it may take, and how your privacy will be protected. You decide about each opportunity separately. You can say yes, say no, or decide later. Saying yes to one opportunity does not opt you into future requests, and saying no to one opportunity does not change your MDA membership. MDA keeps a record of how you responded to the opportunity, while Mito Map or another approved system keeps the detailed consent record, future-contact settings when available, and any later changes.
How it works
We give you the important details before you choose.
For every survey, study, recruitment request, or partner project, MDA explains the purpose, who is making the request, what you would be asked to do, how privacy is handled, and what you may receive for taking part. Your detailed consent choices are kept securely in Mito Map or another approved system—not on this public page.
1. Read the details
See who is making the request, its purpose, what you would do, what information is needed, how privacy is protected, and whether participation credits are offered.
2. Make your choice
You can agree, decline, or wait. Saying no does not end your MDA membership or affect other opportunities. When the option is available, you can change future-contact settings later in Mito Map.
3. We record your choice
MDA records your response. Mito Map or another approved system stores any detailed consent permissions.
4. Review future choices
You can review or change choices about future participation in your dashboard or in Mito Map. Information already used in completed research may not be removable. Each opportunity will explain that limit before you agree.
Your choices
What to know before you say yes
You will know the purpose
Each request explains what the organization wants to learn or accomplish, such as running a study, finding possible participants, preparing a publication, or understanding patient priorities.
Mito Map keeps detailed permissions
MDA records the public-side response for each opportunity. Mito Map is where granular consent, later changes, opt-out settings when available, and other private follow-up stay when that step is needed.
Only needed information is used
Your detailed information stays in Mito Map. MDA usually uses selected summaries and basic participation details. More information can be used only when the request explains it and you give the required consent.
You can say no
You can decline an opportunity, pause future messages when that option is available, or decide later. You will not lose access to the MDA community.
Review the public rules
The transparency page explains governance, public metrics, and how MDA stays separate from Mito Map. If something feels unclear, you can check those rules before you decide.
You will know how privacy works
Each opportunity explains whether researchers will see group totals, short summaries, information labeled with an ID instead of your name, or information with identifying details removed.
Credits are not money
Participation credits are a record that you completed an approved activity. They are not cash, ownership in a company, digital tokens, discounts, or a promise of future payment.
Available now
Opportunities you can review
These cards show the basic details you will receive before deciding whether to take part.
Share a Leigh syndrome care update
Share recurring care, function, and support updates to help strengthen Leigh syndrome registry readiness.
MELAS / m.3243A>G Longitudinal Check-In
Contribute recurring check-ins to help researchers understand change over time.
Keep OPA1 vision and fatigue updates current
Support OPA1 research planning by keeping structured lived-experience summaries current.
Check your POLG profile details
Help strengthen POLG registry readiness by confirming participation metadata and missing summary categories.
Keep TWNK priorities current
Keep TWNK-related symptoms, care gaps, and daily-life priorities current as family needs change.
Mitochondrial Natural History Readiness Study
Understand mitochondrial disease progression over time through patient-reported and derived registry summaries.
Important limits
What reviewing or joining an opportunity does not guarantee
Reviewing or joining an opportunity does not guarantee a place in a study or clinical trial, access to treatment, or any payment.
Taking part is not an investment. It does not give you ownership in a company, a dividend, or a digital token.
This page does not provide medical advice or replace your healthcare. Research projects must still complete all required ethics, privacy, and data reviews.
MDA does not sell records that identify you through this page. Saying no to one opportunity does not force you to join—or prevent you from considering—future opportunities.