Evidence review
Map literature, verify sources, identify gaps, or summarize what is known for a mitochondrial disease or outcome.
Independent researchers wanted
Help move mitochondrial-disease research forward.
You do not need a university appointment or a fully formed study to start a conversation. Mito Discovery Alliance welcomes serious independent scientists, analysts, developers, clinicians, retired researchers, patient and caregiver researchers, and other skilled contributors who can help answer useful questions responsibly.
Where help is useful
Bring a question—or contribute to one already taking shape.
Early contributions can be small, concrete, and completed without access to private patient records.
Data and statistics
Help with study design, reproducible analysis, natural-history methods, endpoints, data dictionaries, or quality checks.
Software and visualization
Build or review code, dashboards, privacy-preserving workflows, accessibility, and clear scientific visualizations.
Patient-centered research
Turn patient priorities into answerable questions, reduce study burden, and help return findings in plain language.
A project idea is welcome, but not required.
If you have relevant skills and want to help, use the application to describe what you can contribute in the next 30–90 days. A publication, portfolio, GitHub profile, work sample, or relevant lived-experience project can help us understand fit; traditional credentials are not the only evidence we consider.
Available data sources
Start by understanding what the community has begun to assemble.
Coverage varies by participant and disease program. These sources are not an open downloadable dataset: every use is limited to an approved question, participant permissions, privacy review, and the minimum information needed.
Mito Map participant summaries
Patient- or caregiver-entered longitudinal summaries covering diagnoses, symptoms, treatments, medications, care history, daily function, and changes over time when shared and authorized.
Disease-program and survey data
Program enrollment, patient-priority surveys, research check-ins, patient-reported outcomes, caregiver observations, and consent or participation history.
Clinical and genetic summary fields
Diagnosis status, mitochondrial subtype, age at symptom onset, family history, and coverage or approved summaries of genetics, labs, imaging, hospital use, and clinician measures when available.
Wearable and digital-function summaries
Authorized summaries such as activity, steps, sleep, resting heart rate, heart-rate variability, recovery, fatigue, mobility, grip, sit-to-stand, dexterity, or other function measures when contributed.
Important boundary: detailed health records remain in Mito Map or another approved governed workflow. Researchers should expect aggregate, de-identified, limited, or summary information—not unrestricted raw records or direct participant contact. MDA first checks cohort size, completeness, freshness, consent coverage, and fit before representing a source as research-ready.
Who qualifies
Ability can be demonstrated without credentials or a university title.
MDA can evaluate publications, code, notebooks, technical writing, training, work samples, lived-experience expertise, supervised task performance, references, or an MDA skills challenge.
You participate in your personal capacity.
No employer, client, sponsor, or institution directs or funds the work.
No third-party confidentiality, outside-work, or invention-assignment term claims the contribution.
You can accept MDA's direct agreement and assign defined Project IP.
Start without sensitive data
Contribute first. Earn trust and responsibility through demonstrated work.
Evidence
Build literature maps, source verification, endpoint landscapes, or reproductions of public analyses.
Data and methods
Create public or synthetic notebooks, statistical methods, data dictionaries, phenotype mappings, or quality-control tests.
Software
Contribute code modules, visualization, documentation, accessibility, privacy, or security improvements.
Patient partnership
Translate priorities into questions, review burden and outcome relevance, and improve plain-language communication.
Translation
After approval, support patent landscapes, validation plans, technical diligence, partner evidence packets, or founder plans.
Progressive access
Open participation does not mean open patient data.
Work normally begins with public, synthetic, non-sensitive, or aggregate information. Controlled access is project-specific, supervised, time-limited, and contingent on identity, skills, training, direct contracting, ethics/privacy review, and conflict/IP clearance.
No participant identities, contact information, direct recontact, or unrestricted downloads by default.
No shared credentials, unapproved local storage, public AI tools, or unapproved cloud services.
Every output receives scientific, privacy, confidentiality, provenance, and patent review before release.
Human-subjects work requires the appropriate IRB or other compliant ethics arrangement.
Share in outcomes
Supply the work. Participate when real portfolio value is created.
Eligible independent contributors can earn 2,250-10,000 outcome participation credits, with planning-value targets from $22,500 to $100,000. These are one system, not separate awards. Separately documented patent or licensing economics and a pathway to propose or join an approved spinout may also apply.
Pool participation uses eligible researcher credits divided by total eligible program credits—not a promised fixed percentage.
Credits are tied to accepted, reproducible, documented contribution and have no fixed cash value.
Patent economics require separate invention and proceeds documentation.
Spinout participation may include founder equity, options, consulting, employment, or other negotiated economics.
No result, payout, patent, company, equity value, or liquidity is guaranteed.
Check your obligations first.
Do not use this pathway to avoid an employer, university, sponsor, client, technology-transfer office, or IRB. When uncertain, disclose first; MDA may require a policy, waiver, outside-activity approval, or counsel review.