Longitudinal Natural History Study of Patients With Peroxisome Biogenesis Disorders (PBD)

Recruiting Observational Study
Peroxisome Biogenesis Disorder Zellweger Spectrum Disorder RCDP - Rhizomelic Chondrodysplasia Punctata D-Bifunctional Protein Deficiency Alpha-Methylacyl-CoA Racemase Deficiency Peroxisomal Acyl-CoA Oxidase Deficiency Peroxisomal Acyl-CoA Oxidase 2 Deficiency ATP Binding Cassette Subfamily D Member 3 Gene Mutation ACBD5 (AcylCoA Binding Domain 5) Deficiency Adult Refsum Disease Sterol Carrier Protein 2 Deficiency
No Placebo Group Every participant receives an active treatment — no one gets a placebo. No Study Drug Researchers observe your health over time — no experimental treatment is given.
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At a Glance
Sex
Any
Study type
Observational
Participants needed
244 (estimated)
Sponsor
McGill University Health Centre/Research Institute of the McGill University Health Centre · Other
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About This Trial
The Peroxisome Biogenesis Disorders (PBD) are a group of inherited disorders due to defects in peroxisome assembly causing complex developmental and metabolic sequelae. In spite of advancements in peroxisome biology, the pathophysiology remains unknown, the spectrum of phenotypes poorly characterized and the natural history not yet systematically reported. Our aims are to further define this popul…
Trial Locations
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Eligibility Criteria
Inclusion Criteria: * Diagnosis of PBD or * Single peroxisome enzyme/protein defect with phenotype similar to PBD Exclusion Criteria: * Not a PBD * Not a single peroxisome enzyme/protein defect with phenotype similar to PBD
Contacts

Nancy E Braverman, MD, MS

(1) 514-934-1934

nancy.braverman@mcgill.ca

CONTACT

Evelyn M Zavacky, MSc

(1) 514-934-1934

pbd.genetics@mcgill.ca

CONTACT