Zobrazeno 1 - 10
of 15
pro vyhledávání: '"Victoria, Hedley"'
Autor:
Victoria Hedley, Matt Bolz-Johnson, Ines Hernando, Rosalind Kenward, Rima Nabbout, Clara Romero, Franz Schaefer, Sheela Upadhyaya, Together4RD Steering Group
Publikováno v:
Orphanet Journal of Rare Diseases, Vol 18, Iss 1, Pp 1-22 (2023)
Abstract Notwithstanding two decades of policy and legislation in Europe, aimed to foster research and development in rare conditions, only 5–6% of rare diseases have dedicated treatments. Given with the huge number of conditions classed as rare (w
Externí odkaz:
https://doaj.org/article/d01487e60fb147dc90105ed0732dfcfa
Autor:
Anando Sen, Victoria Hedley, Eva Degraeuwe, Steven Hirschfeld, Ronald Cornet, Ramona Walls, John Owen, Peter N. Robinson, Edward G. Neilan, Thomas Liener, Giovanni Nisato, Neena Modi, Simon Woodworth, Avril Palmeri, Ricarda Gaentzsch, Melissa Walsh, Teresa Berkery, Joanne Lee, Laura Persijn, Kasey Baker, Kristina An Haack, Sonia Segovia Simon, Julius O. B. Jacobsen, Giorgio Reggiardo, Melissa A. Kirwin, Jessie Trueman, Claudia Pansieri, Donato Bonifazi, Sinéad Nally, Fedele Bonifazi, Rebecca Leary, Volker Straub
Publikováno v:
Data, Vol 9, Iss 4, p 55 (2024)
The conect4children (c4c) initiative was established to facilitate the development of new drugs and other therapies for paediatric patients. It is widely recognised that there are not enough medicines tested for all relevant ages of the paediatric po
Externí odkaz:
https://doaj.org/article/e7a77672ae75448a8d6368c5e0e60542
Autor:
Mariagrazia Felisi, Fedele Bonifazi, Maddalena Toma, Claudia Pansieri, Rebecca Leary, Victoria Hedley, Ronald Cornet, Giorgio Reggiardo, Annalisa Landi, Annunziata D’Ercole, Salma Malik, Sinéad Nally, Anando Sen, Avril Palmeri, Donato Bonifazi, Adriana Ceci
Publikováno v:
Data, Vol 9, Iss 4, p 59 (2024)
The reuse of paediatric individual patient data (IPD) from clinical trials (CTs) is essential to overcome specific ethical, regulatory, methodological, and economic issues that hinder the progress of paediatric research. Sharing data through reposito
Externí odkaz:
https://doaj.org/article/9158e49a93a246568a90d8f1c50b1cc2
Autor:
Chima Amadi, Rebecca Leary, Avril Palmeri, Victoria Hedley, Anando Sen, Rahil Qamar Siddiqui, Dipak Kalra, Volker Straub
Publikováno v:
Applied Sciences, Vol 12, Iss 3, p 1604 (2022)
Data dictionaries for clinical trials are often created manually, with data structures and controlled vocabularies specific for a trial or family of trials within a sponsor’s portfolio. Microsoft Excel is commonly used to capture the representation
Externí odkaz:
https://doaj.org/article/68c8bf48368e4554930a04de38122b2d
Autor:
Anando Sen, Avril Palmeri, Joanne Lee, Victoria Hedley, Jacques Thuet, Perrine Lignon, Valerie Cotonnec, Rebecca Leary, Sinéad Nally, Volker Straub
Introduction The conect4children (c4c) consortium was setup to facilitate the development of new drugs and therapies for paediatric populations and address key challenges associated with paediatric clinical trials. Two of the major adopting principle
Externí odkaz:
https://explore.openaire.eu/search/publication?articleId=doi_dedup___::c8db8eacd3394987b1f9e212652bda2d
https://zenodo.org/record/7342253
https://zenodo.org/record/7342253
Publikováno v:
Journal of Community Genetics
Addressing the many challenges posed by rare diseases to patients, families, and society at large demands a specific national (as well as transnational) focus. Historically, the practice of elaborating and adopting national plans and strategies for r
Externí odkaz:
https://explore.openaire.eu/search/publication?articleId=doi_dedup___::c3ea8c64e834628d63c029842e5874a7
https://doi.org/10.1007/s12687-021-00525-4
https://doi.org/10.1007/s12687-021-00525-4
Publikováno v:
J Community Genet
Externí odkaz:
https://explore.openaire.eu/search/publication?articleId=doi_dedup___::df58efcc7c3518a847e40254b7d49c20
https://europepmc.org/articles/PMC8141078/
https://europepmc.org/articles/PMC8141078/
Autor:
Raquel Castro, Myriam de Chalendar, Ildikó Vajda, Silvia van Breukelen, Sandra Courbier, Victoria Hedley, Maria Montefusco, Stephanie Jøker Nielsen, Dorica Dan
Publikováno v:
Handbook Integrated Care ISBN: 9783030692612
Externí odkaz:
https://explore.openaire.eu/search/publication?articleId=doi_________::5ec8018ebe6635373c3ac0e342a94434
https://doi.org/10.1007/978-3-030-69262-9_44
https://doi.org/10.1007/978-3-030-69262-9_44
Publikováno v:
European Journal of Medical Genetics. 60:185-189
Joint Actions are successful initiatives from the European Commission (EC) that have helped to raise awareness and to bring significant benefit to those suffering from a rare disease (RD). In this paper, we will focus on the activities developed by t
Externí odkaz:
https://explore.openaire.eu/search/publication?articleId=doi_dedup___::0c7c1eba6fb2b196700e100a1ea8038f
https://doi.org/10.1016/j.ejmg.2017.01.002
https://doi.org/10.1016/j.ejmg.2017.01.002
Autor:
Drashtti Vasant, Andrea Splendiani, Vibhor Gupta, Gaspare Mellino, Tom Plasterer, Victoria Hedley, Eric Little, Beeta Balali-Mood, Kees van Bochove, Ian Smith, Peter Walgemoed, Rainer Winnenburg, Alexandra Grebe de Barron, Rafael C. Jimenez, Ian Harrow, Martin Romacker, Jan Taubert, John Wise
Publikováno v:
Drug discovery today. 24(4)
Biopharmaceutical industry R&D, and indeed other life sciences R&D such as biomedical, environmental, agricultural and food production, is becoming increasingly data-driven and can significantly improve its efficiency and effectiveness by implementin
Externí odkaz:
https://explore.openaire.eu/search/publication?articleId=doi_dedup___::d74afe154d5ebba8dea3f8b98fe47e4c
https://pubmed.ncbi.nlm.nih.gov/30690198
https://pubmed.ncbi.nlm.nih.gov/30690198