Newly interested families
Share MDA when a patient or caregiver asks how they can contribute to mitochondrial disease research.
Clinicians
A simple page to share with patients who ask about research.
MDA gives clinicians a patient-friendly place to send people who want to learn about mitochondrial disease research. The handoff should stay light: share this page, the handout, or a short non-sensitive note. Do not send full charts, genetic reports, lab files, or urgent medical questions through public forms. Patients decide whether to join and whether to use Mito Map for private health details.
Quick workflow
Start with the page, then the handout, then a short note if follow-up makes sense.
This keeps the handoff clear for clinic staff. A referral is only an introduction, not a promise that a patient will join, qualify, or enroll in a study.
Share this page when a patient asks what MDA is and how to start.
Give the handout when they need something to review later or bring back to clinic.
Use the referral form for a short, non-sensitive introduction only when staff-reviewed follow-up makes sense.
Keep private health details in Mito Map and urgent medical questions inside normal care channels.
Referral steps
What happens after a clinician shares MDA.
MDA reviews the note, keeps the first response lightweight, and follows up when appropriate.
Patients can read about the Alliance before deciding whether to create a Mito Map profile.
The site explains privacy, consent, and what the public website stores in plain language.
The patient controls whether to proceed, and Mito Map remains separate from clinician care.
When to share
Useful for patients who are ready to explore research participation.
Complex longitudinal history
Mito Map can help patients organize symptoms, diagnoses, treatments, labs, genetics, goals, and changes over time.
Preparation for visits
Patient-controlled timelines and summaries may help families arrive with a clearer story for appointments.
Clear clinical boundary
MDA is educational and research-participation focused. It does not provide medical advice, diagnosis, treatment guidance, or urgent support.
Care experience
What patients may gain from the public handoff.
They can organize the history they want to bring into a visit.
They can use summaries to reduce repetitive retelling across appointments.
They can prepare questions before seeing their care team.
They can keep private updates in Mito Map instead of scattering them across messages.
What clinicians can expect
A low-burden referral should not create more work for the practice.
Simple handoff
Share the public page, handout, or invite form without assembling a full chart summary.
Patient-led follow-up
The patient or caregiver chooses whether to continue, so the clinic does not have to manage the entire participation process.
Bounded information
Public forms ask for only the minimum needed for a follow-up conversation and are not a place for lab files or genetic reports.
Clear escalation path
If the patient needs medical care, the clinical team keeps ownership of diagnosis and treatment decisions.
Referral workflow
Share the option, then let staff and the patient handle the next step.
1. Give the patient this page
Share MDA as a research participation resource when a patient asks what they can do beyond routine care.
2. Submit a lightweight note
Use the public referral form for a non-sensitive introduction, not a chart upload or urgent medical question.
3. Staff reviews and invites
MDA reviews the note, follows up with the patient when appropriate, and points them to the public handoff or a patient-controlled Mito Map invite when they are ready.
4. Patient controls what comes back to clinic
If useful, the patient can bring their own notes, timelines, or summaries to future visits. MDA does not send medical instructions to clinicians.
Clinician FAQ
Answers that tend to matter before you send a patient.
What does the patient receive after I share MDA?
They can read the public explanation of the Alliance, review privacy and consent boundaries, and decide whether to create a Mito Map profile for selected summaries and research opportunities. If a staff-reviewed referral is appropriate, they receive a patient-controlled follow-up path and, when ready, a Mito Map invite rather than a medical instruction.
Will this add work for my clinic?
The site is designed for a light referral conversation. You can share the page, the printable handout, or the invite form without assembling a complete medical packet or tracking the patient through the process yourself. MDA handles the public handoff and patient follow-up when appropriate.
What should I avoid sending?
Do not include raw clinical records, full lab reports, genetic reports, detailed treatment histories, or urgent medical questions in the public referral form. Keep it non-sensitive and patient-directed.
How do I explain the handoff to patients?
Tell them MDA is the public starting point for learning and referral, and Mito Map is the private place for detailed health information, consent choices, and follow-up. That keeps the clinic conversation simple and gives the patient one clear next step.
How should I use the evidence library?
Use it as background and a conversation starter. The public library is organized around reviewed updates, plain-language summaries, aggregate outcomes, and longitudinal reporting, not as a substitute for clinical judgment or a statement that any finding changes care.
Is MDA trying to replace medical care?
No. MDA is an educational and participation gateway. Diagnosis, treatment, medication decisions, and urgent care remain the clinician's responsibility.
Evidence use
Use public materials as education, not medical instructions.
Start with the clinician handout for a one-page overview of what MDA is and what the patient can expect.
Use the evidence library for plain-language summaries, publications, and reviewed updates that can inform questions for a follow-up visit.
Use impact pages for aggregate outcomes, longitudinal reporting, and public evidence that is reviewed before it is shared.
Use transparency pages to see how governance, consent, and Mito Map handoff boundaries are explained publicly.
When in doubt, keep the material framed as education and participation support rather than care guidance.
Clinician handout
A printable note for clinic visits and follow-up messages.
The handout explains what MDA is, when it may be appropriate to share with a patient or caregiver, what patients can expect, and what the Alliance does not provide.
Patient summary ideas
Useful handout formats for families who want something they can bring back to clinic.
Visit-ready summary
A short patient-facing page that names the condition, the main questions to bring to clinic, and the next public step without listing raw records.
Caregiver recap
A plain-language take-home note that explains what was reviewed, what is optional, and what the patient still controls.
Timeline sketch
A simple, patient-controlled chronology of major events that can help a family retell the story without rebuilding every chart detail.
Questions sheet
A one-page prompt list for the next visit so the patient can organize follow-up questions before the appointment.
Visit-ready summary template
A take-home prompt that helps a patient or caregiver write down what changed, what to ask, and what to keep private.
Download templateThese are content concepts for patient-supported conversations, not generated clinical summaries or medical advice. If a future handout references a study or consensus statement, it should link the source directly and keep the wording neutral.
Clinician resource pathway
Useful links for a low-burden referral conversation.
Patient handout
Share a concise overview of what MDA is and what it is not.
Download handoutEvidence library
Review plain-language updates, publications, and source-linked consensus materials. Open the original source before treating any guideline or consensus statement as clinic guidance.
Open libraryFAQ
Review common questions about accounts, consent, payments, data sale, and clinical boundaries.
Read FAQTransparency
See data principles, governance, consent, and public accountability language.
Review transparencyImpact
View aggregate progress and research updates without exposing private patient records.
View impactResearch
Understand how study proposals and collaboration requests are reviewed.
Research pathwayGovernance
Review public governance roles, decisions, collaborations, and summaries.
Governance centerGuideline reading path
Use source-linked materials to orient, not to endorse.
Start with the patient handout for the clinic conversation and the next step. If a page cites a guideline or consensus statement, follow the original source first and keep the wording neutral.
Use reviewed publications, consensus statements, and plain-language updates as background only.
If a future resource cites a guideline, link the source directly and do not imply that MDA endorses it unless the source says so explicitly.
Use impact pages for aggregate updates and keep individual care decisions with the clinician.
Handout ideas
Small, reusable formats can make referral conversations easier.
One-page patient take-home
A short summary of what MDA is, what patients can expect, and where to start when they are ready.
Referral note template
A concise clinic-facing script that explains the public site, the handout, and the patient-led handoff.
Front-desk script
A plain-language prompt staff can use when a family asks where to find the right public resource.
After-visit message
A copy-and-paste message that links to the handout, FAQ, and evidence library without adding chart burden.
These are content ideas, not published guideline materials. If a future resource cites a guideline or consensus statement, it should link the source directly and avoid implying endorsement unless the source says so explicitly.
Invite lifecycle
A referral starts with patient control.
1. Clinician sends a light referral
The public form collects clinician contact, patient permission status, a non-identifying patient reference, disease area, and a short note. It must not include records, full dates of birth, genetics, labs, or urgent medical details.
2. MDA reviews before any invite
A community manager reviews the note within the intake queue, assigns follow-up, and decides whether more information is needed. The record stays in MDA as referral metadata only.
3. Patient receives the next step
When appropriate, staff sends a patient-controlled MDA follow-up or Mito Map invite. The patient or caregiver decides whether to continue.
4. Mito Map owns private health details
Mito Map handles detailed profile data, granular consent, matching, readiness, and sync/revocation events. MDA tracks only the referral status and safe aggregate handoff progress.
Mito Discovery Alliance is not a medical provider and does not provide medical advice. Clinicians remain responsible for independent clinical judgment, diagnosis, treatment, and referral decisions. Do not use MDA forms for emergencies or time-sensitive medical questions.
Contact form