Zobrazeno 1 - 9
of 9
pro vyhledávání: '"Nicole, Millis"'
Autor:
Rasa Ruseckaite, Marisa Caruso, Chethana Mudunna, Falak Helwani, Nicole Millis, Susannah Ahern
Publikováno v:
BMC Health Services Research, Vol 23, Iss 1, Pp 1-28 (2023)
Abstract Background Rare disease registries (RDRs) facilitate monitoring of rare diseases by pooling small datasets to increase clinical and epidemiological knowledge of rare diseases and promote patient centred best practice. The aim of this study w
Externí odkaz:
https://doaj.org/article/5af61d21a6da48779f899fba5994a02e
Autor:
Rasa Ruseckaite, Chethana Mudunna, Marisa Caruso, Falak Helwani, Nicole Millis, Paul Lacaze, Susannah Ahern
Publikováno v:
Orphanet Journal of Rare Diseases, Vol 18, Iss 1, Pp 1-25 (2023)
Abstract Background Rare diseases (RDs) affect approximately 8% of all people or > 400 million people globally. The Australian Government’s National Strategic Action Plan for Rare Diseases has identified the need for a national, coordinated, and sy
Externí odkaz:
https://doaj.org/article/b08490660dfd4589b83b70bc7bea5c7a
Autor:
Didu S Kariyawasam, Joanne Scarfe, Christian Meagher, Michelle A Farrar, Kaustav Bhattacharya, Stacy M Carter, Ainsley J Newson, Margaret Otlowski, Jo Watson, Nicole Millis, Sarah Norris
Publikováno v:
PLoS ONE, Vol 19, Iss 3, p e0299336 (2024)
BackgroundNewborn bloodspot screening is a well-established population health initiative that detects serious, childhood-onset, treatable conditions to improve health outcomes. With genomic technologies advancing rapidly, many countries are actively
Externí odkaz:
https://doaj.org/article/c35ba539296042aea643c2165c6bbe3f
Autor:
Christina Q. Nguyen, Kristine Alba-Concepcion, Elizabeth E. Palmer, Jackie L. Scully, Nicole Millis, Michelle A. Farrar
Publikováno v:
Orphanet Journal of Rare Diseases, Vol 17, Iss 1, Pp 1-10 (2022)
Abstract Background The patient voice is becoming increasingly prominent across all stages of therapeutic innovation. It pervades research domains from funding and recruitment, to translation, care, and support. Advances in genomic technologies have
Externí odkaz:
https://doaj.org/article/a2b2b11a945f4e20a7c8decd5cfced22
Autor:
Nicole Millis
Publikováno v:
Journal of inherited metabolic diseaseREFERENCES. 45(5)
Externí odkaz:
https://explore.openaire.eu/search/publication?articleId=doi_dedup___::b8088f97ca7f1cb993a0c150c06eb9f5
https://pubmed.ncbi.nlm.nih.gov/35737652
https://pubmed.ncbi.nlm.nih.gov/35737652
Publikováno v:
Journal of Paediatrics and Child Health. 57:778-781
Almost exactly 10 years after the publication of 'Call for a national plan for rare diseases' in this journal, the Federal Government launched the National Strategic Action Plan for Rare Diseases (the Action Plan) on the 26th of February 2020, in the
Externí odkaz:
https://explore.openaire.eu/search/publication?articleId=doi_dedup___::16c8c733597f3a0071e148002886a359
https://doi.org/10.1111/jpc.15507
https://doi.org/10.1111/jpc.15507
Autor:
Paul Lacaze, Nicole Millis, Matthew I. Bellgard, Yvonne Zurynski, Ingrid Winship, John J McNeil, Megan Fookes, Adam Jaffe, Alan H. Bittles
Publikováno v:
Internal Medicine Journal. 47:1075-1079
When registries collect accurate clinical data over time, they can act as fundamental support structures for patients and their families and powerful cost-effective instruments to support clinical trials and translational research to improve quality
Externí odkaz:
https://explore.openaire.eu/search/publication?articleId=doi_________::5c819109658109c4a4f7e8b21d2ebae3
https://doi.org/10.1111/imj.13528
https://doi.org/10.1111/imj.13528
Publikováno v:
The Medical Journal of Australia
Externí odkaz:
https://explore.openaire.eu/search/publication?articleId=doi_dedup___::1eea4b1f38f92b1c2bf701a9715de323
https://doi.org/10.5694/mja2.50671
https://doi.org/10.5694/mja2.50671
Autor:
Paul, Lacaze, Nicole, Millis, Megan, Fookes, Yvonne, Zurynski, Adam, Jaffe, Matthew, Bellgard, Ingrid, Winship, John, McNeil, Alan H, Bittles
Publikováno v:
Internal medicine journal. 47(9)
When registries collect accurate clinical data over time, they can act as fundamental support structures for patients and their families and powerful cost-effective instruments to support clinical trials and translational research to improve quality
Externí odkaz:
https://explore.openaire.eu/search/publication?articleId=pmid________::d112fcb5df22015a9296f639671a0cdd
https://pubmed.ncbi.nlm.nih.gov/28891182
https://pubmed.ncbi.nlm.nih.gov/28891182