planning program

Neuromuscular and Persistent Energy-Limiting Conditions Program

A research and patient-participation program for adults with neuromuscular disease, fibromyalgia, complex chronic illness, or another persistent condition that substantially limits energy or physical function.

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.

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 study how muscle performance, symptoms, recovery, and daily function change over time across different energy-limiting conditions. Diagnoses will remain separately classified so that distinct diseases are not treated as medically interchangeable.

Who this program is for

Adults with a neuromuscular disease
Adults with fibromyalgia
Adults with complex chronic illness and persistent functional limitation
Adults with another qualifying energy-limiting condition
Participants who do not fit another study cohort but meet the approved eligibility criteria

Study plan

Initial research questions

Does the Energy Score correspond with independent changes in physical function?
Do associations differ among neuromuscular, fibromyalgia, and other diagnostic subgroups?
Which functional measurements are safe and usable across different physical abilities?
How do pain, weakness, exertion, assistive-device use, medication changes, and acute illness affect measurements?

Study-aligned measurements

Canonical Mito Map Energy Score
Grip strength and five-times sit-to-stand
Approved no-grip or accessibility alternatives
Diagnosis and diagnostic-certainty category
Weakness, pain, fatigue, recent exertion, illness, and medication changes
Assistive-device use and measurement accommodations
Completion, burden, failed attempts, and adverse events

Planning and safeguards

Not recruiting until required review and activation are complete.

Initial planned participants

Study-aligned enrollment goal

Minimum analyzable participants

Initial analysis goal

Current enrollment

Planning stage

Current funded balance

Future value is undetermined

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

Important limitation: This is an umbrella program, not a claim that all included conditions are biologically equivalent. MDA will preserve diagnosis-level tags and report condition-specific results only when enough participants are available to protect privacy and support meaningful interpretation.

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

Current funded balance

Qualifying research impact value

Tracked for this program

Program

Neuromuscular and Persistent Energy-Limiting Conditions 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.