File(s) not publicly available

Brain Malformations self-reported surveys

dataset

posted on 2020-06-25, 05:38 authored by Melbourne Academic Centre for Health (MACH)

Understanding, expectation, experience with genomic testing in baseline (pre-test) and follow up (post-test) surveys. This data is self-reported by participants or carers of participants.

History

Institution name

Murdoch Children's Research Institute

Unit name

Australian Genomics

Principal contact name

Stefanie Elbracht-Leong

Principal contact email address

stef.elbrachtleong@mcri.edu.au

Dataset ID

BM Surveys

Available for research?

Collaborating institutions information

AGHA collaborators and partners

Number of people/participants

102

Data source

Research

Study or collection type

Research database/databank

Data collection started

March 2017

Dataset still being added to?

Additional comments

All AGHA flagship datasets are under embargo for external access until 12 months after the final sequencing report for that flagship has been delivered.

Usage metrics

Keywords

Brain Nervous System Malformations Genomic testing self-reported data Survey responses Patient experience Health economics Central Nervous System Neurosciences not elsewhere classified Anatomy Paediatrics

Licence

Restrictive Licence

Exports

RefWorks

BibTeX

Ref. manager

Endnote

DataCite

NLM