planning program

Lyme Disease and Persistent Symptoms Program

A research and patient-participation program for adults with Lyme disease and people experiencing persistent symptoms or functional limitations following Lyme disease.

This program is being prepared. You can join the interest list now, complete available steps, and receive updates as more activities open. Recruitment has not begun; you may register interest while IRB and activation requirements are completed. Private health details stay in Mito Map.

Credit schedule pending governance approval

Current funded and qualifying value: $0. Future value is undetermined.
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Planning terms may change. MDA may revise program goals, participant targets, credit amounts, credit maximums, eligible activities, timelines, and related rules as research needs, funding, operations, governance review, applicable law, or other program needs evolve. Displayed figures are current planning terms, not permanent commitments or guaranteed benefits.

Why join

Help shape a study-ready program.

Help researchers understand how energy, symptoms, recovery, and daily function change during and after Lyme disease. Approved group-level findings may support better study design, measurement selection, and future research into persistent symptoms. Detailed health records remain in Mito Map unless the participant separately authorizes an approved use.

Who this program is for

  • Adults with clinician-diagnosed Lyme disease
  • Adults who previously received treatment for Lyme disease and continue to experience persistent symptoms or reduced function
  • Adults being evaluated for a Lyme disease-related condition when the approved eligibility criteria permit participation
  • People with overlapping diagnoses; each diagnosis and its level of certainty should be recorded separately
  • People who meet study safety-screening requirements for remote functional assessments

Study plan

Initial research questions

  • Does the Mito Map Energy Score correspond with independently measured changes in home physical function?
  • How do fatigue, pain, sleep, cognitive symptoms, exertion, acute illness, and recovery affect function over time?
  • Do longitudinal patterns differ by illness phase, treatment history, symptom duration, or diagnostic-certainty category?
  • Which remote measurements are practical, accessible, and safe for people with Lyme disease and persistent symptoms?

Study-aligned measurements

  • Canonical Mito Map Energy Score
  • Grip strength and five-times sit-to-stand, with approved accessibility alternatives
  • Lyme disease history, diagnostic-certainty category, illness phase, and treatment history
  • Fatigue, pain, sleep, cognitive symptoms, recent exertion, acute illness, and medication changes
  • Post-exertional symptom and recovery patterns when present
  • Function, assessment completion, burden, failed attempts, and adverse events

Planning and safeguards

Not recruiting until required review and activation are complete.

Initial planned participants
50

Study-aligned enrollment goal

Minimum analyzable participants
40

Initial analysis goal

Current enrollment
0

Planning stage

Current funded balance
$0

Future value is undetermined

Data handling: Approved summaries and aggregate information only; detailed records remain in Mito Map.

Important limitation: This program does not diagnose Lyme disease, determine whether an infection is active, or recommend antibiotic or other treatment. Research scores must not be used to start, stop, or change medical care. Participation does not replace evaluation by a qualified clinician.

Credit disclosure: Credits record verified participation activity. They are not cash, equity, tokens, ownership, royalties, or guaranteed payments. Credits may be worth $0. Any future eligibility or value may depend on approved uses of combined participant data, available qualifying value, applicable law, and the program rules in effect at that time. Development of a drug, therapy, diagnostic, or other product does not guarantee a distribution to participants.

Researcher program

Researchers who publish with Alliance data can share in the value they help create.

When a researcher uses consented Alliance data, publishes useful findings, and follows the program's data-use and publication rules, their work can be recognized through a separate Researcher Value Pool.

Researcher value awards are not guaranteed. Eligibility depends on publication status, data-use compliance, program approval, available qualifying value, and applicable law.

Researcher pool stage
pre-revenue

Separate from the patient pool

Researcher goal
$22,500,000

20% of the combined program goal

Strategic researcher range
$8,875,000-$15,500,000

Planning range for future qualifying value

Program share
20%

Share of combined patient and researcher program goals

Current balance
$0

Current funded balance

Qualifying research impact value
$0

Tracked for this program

Program
Lyme Disease and Persistent Symptoms Program

Possible future payments

Credits do not guarantee payment.

This program is currently at the pre-revenue stage. Its patient pool currently holds $0. It has recorded $0 in qualifying revenue and $0 in approved past distributions.

If the program receives qualifying money and approves a Patient Success Distribution, members generally need active enrollment and at least 50 qualifying credits to be considered. Any approved amount would depend on the program rules and each eligible member's credits. Payment is never guaranteed.