Cohort readiness
See whether a disease program has enough organized participation to justify a review.
Partner with us
Partner with the community responsibly.
MDA works with funders, advocacy groups, researchers, pharma, biotech, and clinical organizations when the work can help patients and protect trust. Tell us who you are, which disease area matters, what you want to do, and how patients would benefit. A partnership inquiry does not give access to private patient records or direct access to members.
Fastest path: send your role, the disease program, and whether you need feasibility, sponsorship, or a study review. That is enough to start routing the request.
Why the network matters
Better cohorts make partner review more useful.
Pharma and researchers do not need raw records to see whether a cohort is worth a closer look. MDA can show aggregate signals like cohort readiness, data completeness, longitudinal depth, and governed access so the next step is clearer before any sensitive workflow begins. More complete summaries and repeated updates make that picture sharper over time.
Data completeness
Understand whether the available summaries are complete enough for the approved question.
Longitudinal depth
See whether repeated updates make change over time easier to study.
Governed access
Keep detailed data, consent, and patient-level workflows in Mito Map.
Choose the right route
Start in the right place.
Use this page if you represent a company, funder, foundation, advocacy group, health system, or institution. Patients and families should start with Join or Patients & Families. Clinicians should use the clinician page. Researchers with a study idea can use Research or the researcher application.
Funders and foundations
Use Donate for mission support, recurring gifts, and sponsorships.
Go to DonatePharma and biotech
Use this page for study planning, sponsored collaboration, and program-support conversations.
Start partner inquiryResearchers
Use Research for study ideas, data questions, and patient-partnership requests.
Go to ResearchClinicians, patients, and caregivers
Use Clinicians or Patients for referral and join questions.
See clinician pathPartnership types
Good partnerships make the community stronger.
Research collaborations
Cohort feasibility, data completeness, longitudinal depth, publications, and return of findings with reviewed access boundaries.
Clinical partners
Referral education, resource sharing, care pathway learning, and patient report feedback.
Industry partners
Study planning, recruitment support, real-world evidence planning, and patient-centered outcomes.
Funders and sponsors
Support patient advisory work, community programming, secure infrastructure, and research participation.
Commercial pathways
Contracts should buy governed work, not patient access.
Sponsored collaborations
Funded studies, feasibility reviews, protocol shaping, recruitment planning, and plain-language return-of-value updates.
Service contracts
Defined deliverables, milestones, reporting expectations, and reviewed evidence packets for approved work.
Evidence access
Aggregate feasibility, cohort summaries, and consent-aware planning signals after governance review.
Program sponsorships
Underwrite patient education, governance, secure infrastructure, and community or research programming.
Commercial arrangements are scoped as governed services, sponsorships, or research collaborations. They do not create direct access to identifiable patient data, raw records, or unrestricted cohort matching.
Reviewed summary
A shared summary keeps partner conversations grounded.
Use the same summary structure for pharma, sponsors, and other partners so every request gets the same review standard before anyone talks about scope, budget, or deliverables.
Observed
Verified in MDA and safe to name as directly checked information.
Aggregate
Rolled up, consent-aware summary signals that describe the community without exposing private records.
Governed
Reviewed and approved for sharing in a partner or contract conversation.
Pending review
Not yet cleared for external use and still waiting on governance or data-use review.
Unavailable
Not collected, not confirmed, or not safe to share.
The packet is meant to shorten review, not replace it. If a request needs raw records, identifiable patient details, or unrestricted cohort matching, it belongs in Mito Map or in a reviewed workflow, not in a public partner conversation.
Program fit
Choose the right disease program before you ask for a cohort.
Open programs now
All Mitochondrial Disease Community; POLG Discovery Program; TWNK Discovery Program; OPA1 Discovery Program; MELAS / m.3243A>G Program; Leigh Syndrome Program
Planning-stage programs
LHON / Mitochondrial Optic Neuropathy Program; MERRF / m.8344A>G Program; Single Large-Scale mtDNA Deletion Program; m.3243A>G Multisystem / MIDD Program; MT-ATP6 / NARP / Leigh Spectrum Program
Good study types
Natural history, feasibility, registry design, endpoint planning, biomarker work, recruitment support, and patient-centered outcomes.
A named disease program helps MDA route your request to the right reviewer, but it does not guarantee access, enrollment, or approval. Program-specific work still moves through governance, consent, and minimum-necessary review.
Study readiness support
Useful preparation without overpromising access or outcomes.
Consent-aware registry readiness can help collaborators narrow the study question, shape study design, and plan a more focused recruitment path before anyone is contacted. Aggregate counts, consent coverage, data completeness, and longitudinal depth can show whether a question is worth pursuing, which endpoints may be realistic, and where avoidable rework can be removed, without exposing identifiable patient data or promising enrollment, eligibility, or trial success. More people joining and then returning with consented updates in Mito Map is what makes a cohort easier to review over time and easier to trust for governed access.
Aggregate feasibility
Understand high-level cohort size, freshness, completeness, consent coverage, and readiness signals after review.
Registry readiness
Use consented summary signals to judge whether the cohort is organized enough for study design, without exposing identifiable patient data. If the cohort is still thin, the better next step is usually more joined profiles and more follow-up updates in Mito Map before wider outreach or protocol work.
Biomarker and endpoint planning
Review which measures are already validated, which are exploratory, and what evidence threshold each one needs before it should guide a study or partner decision.
Participant burden
Review whether a proposed study asks too much, duplicates existing work, or needs clearer patient-facing language.
Recruitment readiness
Assess whether current consent coverage and update depth make a targeted outreach path worth exploring.
Return-of-value planning
Define how findings, resources, funding, or plain-language updates could flow back to the community.
Trial readiness support is planning and feasibility support only. It does not guarantee trial eligibility, recruitment success, regulatory outcomes, clinical benefit, or partner access to identifiable patient data. The point is to make study planning more precise with aggregate and consent-aware signals, not to expose private records or blur exploratory signals into validated endpoints.
Innovation pipeline
Ideas can be screened into governed translational work without pretending a spinout already exists.
1. Intake
Use the research or partner form to name the problem, the disease program, the expected patient value, and whether the idea is exploratory, collaborative, or commercial.
2. Triage
MDA checks fit, burden, privacy risk, and whether the request belongs in a study, an evidence packet, a contract, or a more formal review path.
3. Evidence packet
Approved requests can gather aggregate feasibility, governance notes, return-of-value language, and other non-sensitive artifacts that help collaborators decide whether to proceed.
4. Governed next step
Only approved work moves into a study, service contract, collaboration, license, or other translational vehicle. If a future venture is ever warranted, it would be documented through governed portfolio workflows.
5. Public return
When appropriate, the work should come back as a publication, milestone, patient story, or public impact update so the ecosystem can learn from what advanced.
This pipeline describes a review process, not a claim that MDA has already formed spinouts, ventures, or licensed products. Every stage still depends on consent, governance, and legal review.
Partner ROI
What a governed partnership can help sponsors do.
Sharpen feasibility early
Use consent-aware cohort signals to decide whether a concept is worth deeper protocol work before committing to more expensive planning. That includes whether the cohort is complete enough, current enough, and governed enough to answer the question.
Reduce recruitment uncertainty
Look at readiness, coverage, completeness, and burden signals before defining outreach language or site plans.
Tighten the first review
Use the smallest useful question and a reviewed summary so the team can rule out weak fits before more protocol work starts.
Package evidence clearly
Receive a reviewed summary with scope, readiness signals, and review notes that are suitable for decision-making.
Align on workflow
Know when an inquiry becomes a review, a scoped service, a contract, or a declined request so teams can plan next steps.
These are planning advantages, not promises of faster enrollment, lower spend, or better trial results. The value is clearer scope, fewer unnecessary cycles, and a cleaner handoff from inquiry to review.
Evidence packet
Partners can review a tighter packet when the site captures the right non-sensitive artifacts.
1. Inquiry
The request identifies the disease program, collaboration type, sponsor, and whether the question is about feasibility, a governed deliverable, or a review-ready evidence packet.
2. Artifact capture
MDA gathers time-stamped summaries, cohort snapshots, governance notes, and return-of-value materials that can be shared safely after review.
3. Packet assembly
Reviewed inputs are organized into a partner-facing packet that explains scope, uncertainty, and what cannot be shared.
4. Legal or team review
The summary supports diligence and scope discussions. It does not declare patentability or replace legal review.
5. Governed next step
Approved work moves into a contract, collaboration, or research workflow. Anything broader stays in governed systems only.
Access boundaries
Partners can collaborate without gaining private records.
Partners can access
Aggregate feasibility, public impact reporting, governed collaboration summaries, and approved research workflows.
Partners cannot access
Identifiable patient data, raw health records, or public form submissions without review and consent.
Higher prices can make access harder, so the public join path stays free and any paid work is reviewed separately.
Boundaries
Commercial value cannot come before patient trust.
Partners do not receive identifiable patient data through the public MDA website.
Each data use needs a purpose, review process, and consent pathway.
Aggregate feasibility and cohort summaries are the public value story; raw records stay in governed systems.
Partner programs are expected to return value to patients through evidence, access, funding, reports, or community benefit.
Approved cohort matching and detailed research operations happen through reviewed systems, not public forms.
Review path
How partnership review works.
Received
Tell us the partner type, the disease program, the collaboration stage, the biomarker or endpoint question, and the patient value you expect.
Screened
MDA checks whether the request fits the public mission, consent expectations, and available program capacity.
Governance and data-use review
If patient information or cohort access is involved, the request is reviewed before any sensitive workflow is opened. The review also checks whether the request is looking for a validated endpoint, an exploratory signal, or both.
Approved workspace
Approved work gets documented as a governed service, sponsorship, or collaboration with clear boundaries and deliverables.
Declined
Requests that do not fit the model are declined or redirected instead of being forced into the wrong workflow.
What to send first
A good request is specific enough to review quickly.
Your role
Tell us whether you are a funder, foundation, pharma team, biotech company, clinician group, advocacy organization, or research group.
The question
Name the disease program, the collaboration type, and the smallest useful question you want answered.
The return to patients
Describe what the community gets back, such as a summary, publication, funding support, or another plain-language update.
The boundary
If you need raw records, identifiable patient details, or unrestricted cohort matching, that needs a reviewed workflow instead of the public form.
Contact form