Now Enrolling Globally
Natural History Study
A global, fully remote study tracking how ADLD progresses, and powering every clinical trial that comes after it.
A global, fully remote study tracking how ADLD progresses, and powering every clinical trial that comes after it.
Open Worldwide
Any country, any timezone
100% Remote
No travel required
Free to Join
No cost, ever
Have you or a loved one been diagnosed with ADLD?
The study is remote, global, and completely free. A study coordinator will walk you through every step. Patients and family members with confirmed or suspected ADLD diagnoses are welcome.
About the Study
The ADLD Natural History Study is a longitudinal research study that follows ADLD patients over time to understand how the disease progresses. By tracking symptoms, biomarkers, and MRI findings across a global cohort, we build a picture of ADLD that no single clinic could assemble alone.
Because ADLD is so rare, this data is critical. It allows us to use patients' own natural progression as a "synthetic control arm" in future clinical trials, meaning every trial participant gets the real medicine, not a placebo.
Tracks Disease Progression
Longitudinal MRI, functional assessments, and biosamples collected periodically over years.
Builds a Global Cohort
Participants from every country join remotely, contributing to a single global ADLD dataset.
Powers Clinical Trials
Your data becomes the synthetic control arm, so every trial participant gets real medicine, not a placebo.
Your Impact
Powers Future Trials
Your data creates a synthetic control arm, so future patients get the real medicine, not a placebo.
Validates Biomarkers
Helps identify which blood tests and MRI patterns best reflect disease progression over time.
Global Impact
Participants worldwide are building the global dataset that will anchor every future ADLD trial.
Simple Process
Contact Us
Email or call to express your interest in enrolling.
Coordinator Call
A study coordinator walks you through eligibility and next steps.
Remote Assessments
Complete periodic questionnaires and assessments from home.
You're Contributing
Your data joins the global dataset helping end this disease.
Questions
Do I need a confirmed diagnosis to participate?
Patients with confirmed or clinically suspected ADLD (LMNB1-related) are welcome. Our study coordinator will help determine eligibility during the intake call.
What does participation involve?
Periodic remote questionnaires, optional biomarker sample collection, and medical record sharing. No clinic visits are required. The time commitment is modest; typically a few hours per year.
Is my data kept private?
Yes. All data is de-identified and handled under strict research ethics protocols. You may withdraw at any time.
Can family members participate?
Yes; family members who may be at risk for ADLD or are carriers are encouraged to contact us to discuss their eligibility.
Institutions
Mayo Clinic
Rochester, MN
Lead clinical site and coordinating center for the Natural History Study.
Children's Hospital of Philadelphia
Philadelphia, PA
Clinical partner contributing neurology expertise and patient access to the global cohort.
Support the Study
Your donation funds the global coordination, data systems, and study staff that make this research possible.
Donate Now