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Journal of Paediatrics and Child Health
|
April 16, 2021
Rare diseases research and policy in Australia: On the journey to equitable care
Kaustuv Bhattacharya, Nicole Millis, Adam Jaffe, et al.
BMC Health Services Research
|
November 1, 2023
Informing a national rare disease registry strategy in Australia: a mixed methods study
Rasa Ruseckaite, Marisa Caruso, Chethana Mudunna, et al.
Orphanet Journal of Rare Diseases
|
July 27, 2023
Current state of rare disease registries and databases in Australia: a scoping review
Rasa Ruseckaite, Chethana Mudunna, Marisa Caruso, et al.
Orphanet Journal of Rare Diseases
|
April 19, 2022
The involvement of rare disease patient organisations in therapeutic innovation across rare paediatric neurological conditions: a narrative review
Christina Q Nguyen, Kristine Alba-Concepcion, Elizabeth E Palmer, et al.
Internal Medicine Journal
|
September 12, 2017
Rare disease registries: a call to action
Paul Lacaze, Nicole Millis, Megan Fookes, et al.
European Journal of Human Genetics : EJHG
|
October 14, 2025
"Jumping too far ahead": Australian healthcare professional, scientist, and policy maker perspectives on using genomics in newborn screening
Joanne Scarfe, Alexis Turner, Christian Meagher, et al.
Plos One
|
March 25, 2024
'Integrating Ethics and Equity with Economics and Effectiveness for newborn screening in the genomic age: A qualitative study protocol of stakeholder perspectives
Didu S Kariyawasam, Joanne Scarfe, Christian Meagher, et al.
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of 1
Search research articles
Search
Showing results (1-10 of 7) with videos related to
Sort By:
Page
of 1
Journal of Paediatrics and Child Health
|
April 16, 2021
Rare diseases research and policy in Australia: On the journey to equitable care
Kaustuv Bhattacharya, Nicole Millis, Adam Jaffe, et al.
BMC Health Services Research
|
November 1, 2023
Informing a national rare disease registry strategy in Australia: a mixed methods study
Rasa Ruseckaite, Marisa Caruso, Chethana Mudunna, et al.
Orphanet Journal of Rare Diseases
|
July 27, 2023
Current state of rare disease registries and databases in Australia: a scoping review
Rasa Ruseckaite, Chethana Mudunna, Marisa Caruso, et al.
Orphanet Journal of Rare Diseases
|
April 19, 2022
The involvement of rare disease patient organisations in therapeutic innovation across rare paediatric neurological conditions: a narrative review
Christina Q Nguyen, Kristine Alba-Concepcion, Elizabeth E Palmer, et al.
Internal Medicine Journal
|
September 12, 2017
Rare disease registries: a call to action
Paul Lacaze, Nicole Millis, Megan Fookes, et al.
European Journal of Human Genetics : EJHG
|
October 14, 2025
"Jumping too far ahead": Australian healthcare professional, scientist, and policy maker perspectives on using genomics in newborn screening
Joanne Scarfe, Alexis Turner, Christian Meagher, et al.
Plos One
|
March 25, 2024
'Integrating Ethics and Equity with Economics and Effectiveness for newborn screening in the genomic age: A qualitative study protocol of stakeholder perspectives
Didu S Kariyawasam, Joanne Scarfe, Christian Meagher, et al.
Page
of 1