Pregnancy-related issues in rare and low-prevalence diseases: results of ERN transversal working group on pregnancy and family planning survey

Authors: Dina Zucchi, Diana Marinello, Chiara Tani, Giovanni Fulvio, Silvia Aguilera, Alexandra Benachi, Ruth Biller, Ignacio Blanco, Petra Borgards, Marie-Claude Boiteux, Maria Luisa Brandi, Ester Costafreda, Joao E. Fonseca, Micaela Fredi, Violeta Iotova, Simone Louisse, Cecilia Nalli, Michela Onali, Beverley Power, Christine Rousset-Jablonski, Dominique Sturz, Angela Tincani, Ana Vieira, Susana Capela, Dorica Dan, Julie De Backer, Christine de Die-Smulders, Andreas Dufke, Estelle Lecointe Artzner, Giuseppe Limongelli, Birgit Lorenz, Wiebke Papenthin, María Jesús Pascau, Johanna Raidt, Isabelle Ray-Coquard, Rachel Rimmer, Claas Röhl, Holm Schneider, Tet Yap, Rosaria Talarico, Marta Mosca

Source: Orphanet Journal of Rare Diseases, Vol 20, Iss 1, Pp 1-7 (2025)

Subject Terms: Rare diseases, Pregnancy-related issues, Unmet needs, Medicine

File Description: electronic resource

Relation: https://doaj.org/toc/1750-1172

Access URL: https://doaj.org/article/e8178970fd424c8ea3ab1a68dd33e20a

The CDH patient perspective journey

Authors: Beverley Power

Source: Frontiers in Pediatrics, Vol 11 (2023)

Subject Terms: CDH, Congenital Diaphragmatic Hernia, patient journey, outcomes, pediatrics, healthcare, Pediatrics, RJ1-570

File Description: electronic resource

Relation: https://www.frontiersin.org/articles/10.3389/fped.2023.1052422/full; https://doaj.org/toc/2296-2360

Access URL: https://doaj.org/article/e1eb773418cc4de7914142468d55fdff

Surgical-PEARL protocol: a multicentre prospective cohort study exploring aetiology, management and outcomes for patients with congenital anomalies potentially requiring surgical intervention

Authors: Clare Skerritt, Massimo Caputo, Andrew Mumford, Karen Luyt, Mai Baquedano, Andrew R Bamber, Catherine Bradshaw, Deborah Lawlor, Samantha E de Jesus, Stuart Mires, Beverley Power, Hannah Gill, Tim Overton

Source: BMJ Open, Vol 12, Iss 12 (2022)

Subject Terms: Medicine

File Description: electronic resource

Relation: https://bmjopen.bmj.com/content/12/12/e066480.full; https://doaj.org/toc/2044-6055

Access URL: https://doaj.org/article/e336b2ee8a3c4b8699ffddb82bde5c87

Study protocol: a core outcome set for perinatal interventions for congenital diaphragmatic hernia

Authors: Simen Vergote, Felix De Bie, Jan Bosteels, Holly Hedrick, James Duffy, Beverley Power, Alexandra Benachi, Paolo De Coppi, Caraciolo Fernandes, Kevin Lally, Irwin Reiss, Jan Deprest

Source: Trials, Vol 22, Iss 1, Pp 1-7 (2021)

Subject Terms: Congenital diaphragmatic hernia, Perinatal intervention, Core outcome set, Delphi method, Medicine (General), R5-920

File Description: electronic resource

Relation: https://doaj.org/toc/1745-6215

Access URL: https://doaj.org/article/43261585d01e45b3adf5a5be06487c97