Standardising clinical outcomes measures for adult clinical trials in Fabry disease: A global Delphi consensus

Autor: Alessandro P. Burlina, Mark Thomas, Alison Muir, Michael West, Aleš Linhart, Sandro Feriozzi, Joan Fletcher, Ana Jovanovic, James C. Moon, R. Giugliani, João Paulo Oliveira, Juan Politei, Raphael Schiffmann, Michael Mauer, Daniel G. Bichet, Olivier Lidove, Guillem Pintos-Morell, Christiane Auray-Blais, Alberto Ortiz, Patricio Aguiar, Duncan Cole, Mathias Beck, Perry M. Elliott, Camilla Tøndel, Derralynn Hughes, David Moreno-Martinez, Albina Nowak, Mirjam Langeveld, Andrew Talbot, Einar Svarstad, David G. Warnock, Christoph Kampmann, Paula Rozenfeld, Ulla Feldt-Rasmussen

Publikováno v: Molecular Genetics and Metabolism
Molecular Genetics and Metabolism, Elsevier, 2021, 132 (4), pp.234-243. ⟨10.1016/j.ymgme.2021.02.001⟩
Moreno-Martinez, D, Aguiar, P, Auray-Blais, C, Beck, M, Bichet, D G, Burlina, A, Cole, D, Elliott, P, Feldt-Rasmussen, U, Feriozzi, S, Fletcher, J, Giugliani, R, Jovanovic, A, Kampmann, C, Langeveld, M, Lidove, O, Linhart, A, Mauer, M, Moon, J C, Muir, A, Nowak, A, Oliveira, J P, Ortiz, A, Pintos-Morell, G, Politei, J, Rozenfeld, P, Schiffmann, R, Svarstad, E, Talbot, A S, Thomas, M, Tøndel, C, Warnock, D, West, M L & Hughes, D A 2021, ' Standardising clinical outcomes measures for adult clinical trials in Fabry disease : A global Delphi consensus ', Molecular Genetics and Metabolism, vol. 132, no. 4, pp. 234-243 . https://doi.org/10.1016/j.ymgme.2021.02.001
Molecular genetics and metabolism, 132(4), 234-243. Academic Press Inc.

International audience; Background: Recent years have witnessed a considerable increase in clinical trials of new investigational agents for Fabry disease (FD). Several trials investigating different agents are currently in progress; however, lack of

Externí odkaz: https://explore.openaire.eu/search/publication?articleId=doi_dedup___::e59feee9fdcccd7d02c1d65b9090cc17
https://pubmed.ncbi.nlm.nih.gov/33642210

Making reasonable and achievable adjustments: the contributions of learning disability liaison nurses in ‘Getting it right’ for people with learning disabilities receiving general hospitals care

Autor: Joan Fletcher, Juliet MacArthur, Matthew Hayes, Michael Brown, Siobhan Mack, Andrew McKechanie

Publikováno v: Journal of Advanced Nursing. 71:1552-1563

Aims To examine the role of learning disability liaison nurses in facilitating reasonable and achievable adjustments to support access to general hospital services for people with learning disabilities. Design Mixed methods study involving four healt

Externí odkaz: https://explore.openaire.eu/search/publication?articleId=doi_dedup___::4f5d9719610251f3ecadfe5c49f116a1
https://doi.org/10.1111/jan.12629

Engaging Young Parents and Their Families in a Multi-family Group Work Intervention: Lessons from a Pilot in England

Autor: Anna Fairtlough, Lynn McDonald, Joan Fletcher

Publikováno v: Practice. 25:151-167

This article offers a practice account of the pilot of an inclusive, community based, multi-family group intervention for young mothers and fathers, their children and extended family. Adapting this North American social work intervention, which is d

Externí odkaz: https://explore.openaire.eu/search/publication?articleId=doi_________::1677b3dc5887a4f7b21a25ef14347342
https://doi.org/10.1080/09503153.2013.799647

Learning Disability Liaison Nursing Services in south-east Scotland: a mixed-methods impact and outcome study

Autor: Siobhan Mack, Joan Fletcher, Juliet MacArthur, Michael Brown, Andrew McKechanie, Matthew Hayes

Publikováno v: Journal of Intellectual Disability Research. 56:1161-1174

Background There have been significant concerns about the care and treatment of people with intellectual disabilities (ID) when attending general hospitals, which have led to inquiries that highlight service and systems failures. One response has bee

Externí odkaz: https://explore.openaire.eu/search/publication?articleId=doi_________::a38a4e0cfb4fe0cd1ab5371375407ae4
https://doi.org/10.1111/j.1365-2788.2011.01511.x

Ready for Qualified Practice? A Comparative Study of Capability for Critical Reflection and Analysis of MA Social Work and MA Step Up to Social Work Students at the End of Second Placement

Autor: Adi Staempfli, Lesley Adshead, Joan Fletcher

Social Work education is faced with substantial changes. New programmes like Step Up to Social Work have emerged and were evaluated in relation to intake, programme development and subjective student experiences. The lack of evidence on outcomes of s

Externí odkaz: https://explore.openaire.eu/search/publication?articleId=doi_dedup___::a435c5387286517af04d15ccbeb2c623