Aggregate counts
Public numbers show group-level progress, planning capacity, or update activity. They do not show private records, individual outcomes, or treatment advice.
Publications and milestones
Research outputs should be clear, reviewable, and useful to the mitochondrial disease community.
This page is the public home for reviewed milestones, publications, presentations, reports, and plain-language summaries as they become available. It also shows how work is being prepared for publication, not just whether a result exists.
For clinicians
Use publications for background, then move referral conversations to the clinician page.
Open the clinician page when a patient wants a light referral or invite path.
Download the handout or quick-start one-pager when the clinic needs something printable.
Use the original source document whenever a guideline or consensus statement is cited.
Keep the evidence library for reviewed outputs, not as a substitute for clinical judgment.
Library structure
Help clinicians pick the right layer of evidence fast.
The library is organized so a clinician can start with a summary, open the source, then switch to a printable handout or patient summary when the next conversation needs something concrete.
Reviewed outputs: publications, reports, posters, and milestone notes that have been checked for public use.
Plain-language summaries: short explanations that translate the main point without turning it into medical advice.
Source documents: the original paper or consensus statement when the reader needs exact wording.
Clinic-ready tools: the clinician handout, quick-start one-pager, after-visit template, and patient visit summary template.
Evidence library
Organize public evidence by purpose, not by unsupported claims.
Reviewed publications and presentations should include plain-language summaries when available.
Resource pages should separate aggregate observations from any clinical implication.
Guideline or consensus references should only appear when the source is explicit, and the page should link the original document rather than implying endorsement.
Each item should say what was measured, what was learned, and what still needs follow-up.
Publication readiness
Make each output easy to review before it is shared.
State the research question, audience, and study stage so readers know what the output is for.
Say what was measured, what was learned, and what still needs follow-up.
Label drafts, abstracts, conference materials, and peer-reviewed papers clearly so publication status is obvious.
Pair each public output with a plain-language summary or milestone note when available.
Real-world results
Keep the label honest so evidence does not outrun review.
Use clear status labels for updates, milestones, abstracts, presentations, preprints, and reviewed publications.
Describe what was measured, what group the result comes from, and what still needs follow-up.
Real-world results should be framed as aggregate learning, not proof of benefit or a change to care.
Link the source and a plain-language summary together when both are available.
How to read entries
Use the label, summary, and source link together.
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
Start with the summary, then open the source that matches the question.
Use a plain-language summary first when you want the quick read.
Use the clinician quick-start one-pager or the clinician page for the referral handout, FAQ, and follow-up path.
If the page cites a guideline or consensus statement, open the original document and keep the wording neutral.
Real-world evidence
Public learning starts with reviewed, aggregate results.
Participation becomes evidence after summaries are reviewed and turned into public-safe findings.
Public outputs should say what was measured, what was learned, and what still needs follow-up.
Aggregate outcomes describe group patterns only; they do not change individual care or prove treatment benefit.
Mito Map stays the private home for detailed records, consent, and patient-level workflows.
Public progress reporting
Show progress without overstating what any one result proves.
Pair reviewed outputs with milestone updates so the community can see what moved forward between larger publications.
Label preliminary analyses, conference materials, and peer-reviewed papers differently so the publication status is obvious.
Say what population was measured, what the result means at a high level, and what still needs follow-up before drawing stronger conclusions.
Link to the original source and a plain-language summary when available so patients, families, and clinicians can review the same evidence.
Reviewed publications
Peer-reviewed papers, reports, and formal outputs with public summaries when available.
Presentations and milestones
Talks, posters, milestones, and interim updates that help the community track progress.
Plain-language summaries
Short explanations that translate technical results into patient- and clinician-friendly language.
Clinician referral path
A low-burden starting point for patients who want a referral conversation, handout, or follow-up path.
Open clinician pathClinician quick-start one-pager
A short download that explains the MDA/Mito Map boundary, what to share, and what to avoid sending.
Download quick-startPrintable handout
A one-page referral aid for clinic visits and follow-up messages.
Download handoutEditorial standards
How MDA reviews, dates, and corrects medical content before it is shared.
Read standardsProgram 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.