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Victorian Prader-Willi syndrome Register

dataset

posted on 2020-06-25, 05:54 authored by Melbourne Academic Centre for Health (MACH)

Victorian Prader-Willi Syndrome register collects basic information about individuals with PWS born or living in Victoria. The register is important in allowing RCH to determine the rate of PWS in Victoria and the health and behavioural effects of this condition on the individual and their families. The information collected will contribute to learning more about PWS in Australia and worldwide.

History

Institution name

Murdoch Children's Research Institute

Unit name

Neurodisability and Rehabilitation

Principal contact name

David Amor

Principal contact email address

david.amor@mcri.edu.au

Dataset ID

Victorian Prader-Willi Syndrome register

Available for research?

Number of people/participants

200 approx.

Data source

Research

Study or collection type

Clinical register

Data collection started

Not provided

Dataset still being added to?

Usage metrics

Keywords

Prader-Willi syndrome Chromosomal aberrations Neurology and Neuromuscular Diseases Medical Genetics (excl. Cancer Genetics)Paediatrics

Licence

Restrictive Licence

Exports

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