Cancer data quality and harmonization in Europe: the experience of the BENCHISTA Project – international benchmarking of childhood cancer survival by stage

Autor: Angela Lopez-Cortes, Fabio Didonè, Laura Botta, Lisa L. Hjalgrim, Zsuzsanna Jakab, Adela Cañete Nieto, Charles Stiller, Bernward Zeller, Gemma Gatta, Kathy Pritchard-Jones, The BENCHISTA Project Working Group, Joanne Aitken, Leisa O’Neil, Monika Hack, Ruth Ladenstein, Elizabeth Van Eycken, Nancy Van Damme, Lindsay Frazier, Beatriz De Camargo, Marceli de Oliveira Santos, Zdravka Valerianova, Dobrin Konstantinov, Sumit Gupta, Jason D Pole, Mario Sekerija, Jan Stary, Jaroslav Sterba, Jeanette F Winther, Keiu Paapsi, Brigitte Lacour, Emmanuel Desandes, Jacqueline Clavel, Claire Poulalhon, Friederike Erdmann, Eleni T Petridou, Evdoxia Bouka, Michael Mian, Rocco Galasso, Giuseppe Sampietro, Francesco Vetrano, Milena M Maule, Carlotta Sacerdote, Paola Ballotari, Emilia De Santis, Margherita Ferrante, Rosalia Ragusa, Luca Boni, Magda Rognoni, Rosalba Amodio, Lorenza Boschetti, Francesco Cuccaro, Danila Bruno, Antonio G Russo, Federico Gervasi, Maria L Gambino, Elisabetta Borciani, Maria Michiara, Lucia Mangone, Gianbattista Spagnoli, Stefano Ferretti, Fabio Falcini, Eugenia Spata, Sonia Manasse, Paola Coccia, Francesca Bella, Adele Caldarella, Teresa Intrieri, Tiziana Scuderi, Roberto V Rizzello, Massimo Rugge, Stefano Guzzinati, Deirdre Murray, Tomohiro Matsuda, Kayo Nakata, Miriam J Azzopardi, Aina H Dahlen, Johannesen Tom Børge, Jerzy Kowalczyk, Monika Jedrzejczyk, Gabriela Caldas, Mihaela Bucurenci, Dana Coza, Vesna Zadnik, Arantza Lopez de Munain, Fernando Almela-Vich, Nieves Fuster-Camarena, Ra f a e l Marcos-Gragera, Maria José Sanchez, Nuria Aragones, Raquel Lopez, Maria Dolores Chirlaque, Marcela Guevara, Elena Pardo, Rafael Peris-Bonet, Marià Carulla, Päivi Lähteenmäki, Claudia E Kuehni, Shelagh M Redmond, Henrike Karim-Kos, Paul Stacey, Lucy Irvine, Anna Gavin, Deirdre Fitzpatrick, David S Morrison, Karen Smith, Dyfed Wyn Huws, Janet Warlow, Sandra Strauss, Simon Bailey, Adela Canete Nieto, Nathalie Gaspar, Filippo Spreafico, Angela Polanco, Riccardo Capocaccia, Andrea Di Cataldo, Meric Klein

Publikováno v: Frontiers in Oncology, Vol 13 (2023)

IntroductionVariation in stage at diagnosis of childhood cancers (CC) may explain differences in survival rates observed across geographical regions. The BENCHISTA project aims to understand these differences and to encourage the application of the T

Externí odkaz: https://doaj.org/article/399b6f215939447192dd0aa7bfe6f14a

Cancer treatment data available in European cancer registries: Where are we and where are we going?

Autor: Francesco Giusti, Carmen Martos, Annalisa Trama, Manola Bettio, Arantza Sanvisens, Riccardo Audisio, Volker Arndt, Silvia Francisci, Carine Dochez, Josepa Ribes, Laura Pareja Fernández, Anna Gavin, Gemma Gatta, Rafael Marcos-Gragera, Yolande Lievens, Claudia Allemani, Roberta De Angelis, Otto Visser, Liesbet Van Eycken, the ENCR Working Group on Treatment Data Harmonisation

Publikováno v: Frontiers in Oncology, Vol 13 (2023)

Population-based cancer registries are responsible for collecting incidence and survival data on all reportable neoplasms within a defined geographical area. During the last decades, the role of cancer registries has evolved beyond monitoring epidemi

Externí odkaz: https://doaj.org/article/67fec9ad8da14371b59df9cff45cb8c1

Impact of patient and public (PPI) involvement in the Life After Prostate Cancer Diagnosis (LAPCD) study: a mixed-methods study

Autor: Eila Watson, Adam W Glaser, Penny Wright, Anna Gavin, Jo Brett, Fiona Matley, Zoe Davey, Hugh Butcher, John Keenan, Darryl Catton

Publikováno v: BMJ Open, Vol 12, Iss 11 (2022)

Objectives Standardised reporting of patient and public involvement (PPI) in research studies is needed to facilitate learning about how to achieve effective PPI. The aim of this evaluation was to explore the impact of PPI in a large UK study, the Li

Externí odkaz: https://doaj.org/article/fe7d23a085ac4996adcb019a9643ee5c

Quality of life among symptomatic compared to PSA-detected prostate cancer survivors - results from a UK wide patient-reported outcomes study

Autor: David W. Donnelly, Linda C. Vis, Therese Kearney, Linda Sharp, Damien Bennett, Sarah Wilding, Amy Downing, Penny Wright, Eila Watson, Richard Wagland, William R. Cross, Malcolm D. Mason, Sabine Siesling, Jeannette G. van Manen, Adam W. Glaser, Anna Gavin

Publikováno v: BMC Cancer, Vol 19, Iss 1, Pp 1-9 (2019)

Abstract Background Quality of life among prostate cancer survivors varies by socio-demographic factors and treatment type received; however, less in known about differences in functional outcomes by method of presentation. We investigate differences

Externí odkaz: https://doaj.org/article/2a6b0a365d684c85b890ce3c98004260

A population-based data-linkage study of prescribed pain medications dispensed to persons with cerebral palsy

Autor: Guiomar Garcia Jalon, Aideen Maguire, Oliver Perra, Anna Gavin, Dermot O'Reilly, Allen Thurston

Publikováno v: International Journal of Population Data Science, Vol 3, Iss 2 (2018)

Background Population-based surveys to investigate pain in cerebral palsy (CP) can be costly and results limited by recruitment bias, recall issues, and differences between self-reports and parental accounts. Secondary data analysis may provide a cos

Externí odkaz: https://doaj.org/article/7e51fc696e4f454ba9985e7f5e8cc091