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chILDRANZ Interstitial Lung Diseases self-reported surveys

dataset

posted on 2020-06-25, 05:46 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 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

chILDRANZ Surveys

Available for research?

Collaborating institutions information

AGHA collaborators and partners.

Number of people/participants

Data source

Research

Study or collection type

Research database/databank

Data collection started

October 2018

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

Interstitial Lung Disease Genomic testing Health economics Self-reported data Survey responses Patient experience Respiratory Diseases Medical Genetics (excl. Cancer Genetics)Paediatrics

Licence

Restrictive Licence

Exports

RefWorks

BibTeX

Ref. manager

Endnote

DataCite

NLM