Prospective Natural History Study of POLG Disease

Part of paid clinical trials in San Diego, California.

Sponsor
The POLG Foundation
Study ID
NCT07775872
Status
Not Yet Recruiting

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Conditions

  • PolG, Primary Mitochondrial Myopathy

Eligibility Criteria

Sex
ALL
Age
N/A - 75 Years
Healthy Volunteers
Not accepted

Study Details

The PIONEER study is a prospective, natural history study dedicated to characterizing the clinical progression of POLG-related disorders. The research aims to bridge the gap between genetic diagnosis and drug development by mapping how these rare mitochondrial conditions evolve over time. By observing the disease's natural trajectory through a multi-center approach, The study identifies critical clinical milestones that serve as a foundation for evaluating therapeutic efficacy and future therapeutic interventions

Key Dates

First listed
Aug 20, 2026
Start date
Aug 1, 2026
Status verified
Aug 2026
Primary completion
Jun 17, 2029
Completion
Jun 17, 2031

Study Design

Enrollment
300 participants (estimated)

Arms

  • Arm: Single Observational Cohort
    Single Observational Cohort: Individuals (Pediatric and Adults) with genetically confirmed POLG-related disorders. No intervention is administered. Participants undergo longitudinal clinical assessments, patient-reported outcomes, biomarker collection, and review of routine clinical data.

Primary Outcome Measure

Scale for the Assessment and Rating of Ataxia (SARA) [ Time Frame: Baseline through 36 months (every 12 months) ]

Central Contacts

Locations (6)

FacilityCityStateZIPSite coordinators
University of California San DiegoSan DiegoCalifornia92121
Jennifer Jennifer Yang
858-246-2288
Jennifer Yang (PRINCIPAL_INVESTIGATOR)
Children's Hospital ColoradoAuroraColorado80045
Austin Austin Larson
303-724-2338
Austin Larson (PRINCIPAL_INVESTIGATOR)
Columbia University Irving Medical CenterNew YorkNew York10032
Michio Michio Hirano
212-342-5767
Michio Hirano (PRINCIPAL_INVESTIGATOR)
Akron Children's HospitalAkronOhio44308
Bruce Bruce Cohen
330-543-4734
Bruce Cohen (PRINCIPAL_INVESTIGATOR)
Baylor HospitalDallasTexas75246
Fernado Fernado Scaglia
713-798-4265
Fernado Scaglia (PRINCIPAL_INVESTIGATOR)
UTHealth HoustonHoustonTexas77030
Mary Kay Mary Kay Koeing
713-500-7201
Mary Kay Koeing (PRINCIPAL_INVESTIGATOR)

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