Zobrazeno 1 - 4
of 4
pro vyhledávání: '"Megan, Fookes"'
Autor:
Kathleen Nicholls, Charles Denaro, Michel Tchan, Carolyn Ellaway, Drago Bratkovic, Megan Fookes, Sheridan Campbell, Mark Thomas
Background: Fabry disease is a rare, progressive, X-linked, lysosomal storage disorder characterized by a wide spectrum of heterogeneously progressive clinical phenotypes. In the absence of a cure, disease-specific therapy aims to improve symptoms, s
Externí odkaz:
https://explore.openaire.eu/search/publication?articleId=doi_________::8ff536d5fdba81ac382bc80d429dfb7e
https://doi.org/10.21203/rs.3.rs-1965266/v1
https://doi.org/10.21203/rs.3.rs-1965266/v1
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
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
Autor:
Caron Molster, Hugh Dawkins, Debra Urwin, Sharon van der Laan, Louisa Di Pietro, Dianne Petrie, Megan Fookes
Publikováno v:
Orphanet Journal of Rare Diseases
Background Few studies have examined whether the healthcare needs of people living with rare diseases are being met. This study explores the experiences of Australian adults living with rare diseases in relation to diagnosis, information provision at
Externí odkaz:
https://explore.openaire.eu/search/publication?articleId=doi_dedup___::8de8039e604413e2a5e7317235ee143a
https://doi.org/10.1186/s13023-016-0409-z
https://doi.org/10.1186/s13023-016-0409-z