Common needs in uncommon conditions: a qualitative study to explore the need for care in pediatric patients with rare diseases

Autor: Rosanne M. Smits, Eline Vissers, Rosan te Pas, Noor Roebbers, Wout F. J. Feitz, Iris A. L. M. van Rooij, Ivo de Blaauw, Chris M. Verhaak

Publikováno v: Orphanet Journal of Rare Diseases, Vol 17, Iss 1, Pp 1-9 (2022)

Abstract Background Challenges faced by children diagnosed with a rare disease or complex condition and their family members are often characterized by disease-specific complexities, such as a prolonged diagnostic process, an uncertain prognosis, and

Externí odkaz: https://doaj.org/article/512d7ea448b54288b11842ca48214193

Genome-wide association study in patients with posterior urethral valves

Autor: Loes F. M. van der Zanden, Carlo Maj, Oleg Borisov, Iris A. L. M. van Rooij, Josine S. L. T. Quaedackers, Martijn Steffens, Luca Schierbaum, Sophia Schneider, Lea Waffenschmidt, Lambertus A. L. M. Kiemeney, Liesbeth L. L. de Wall, Stefanie Heilmann, Aybike Hofmann, Jan Gehlen, Johannes Schumacher, Maria Szczepanska, Katarzyna Taranta-Janusz, Pawel Kroll, Grazyna Krzemien, Agnieszka Szmigielska, Michiel F. Schreuder, Stefanie Weber, Marcin Zaniew, Nel Roeleveld, Heiko Reutter, Wout F. J. Feitz, Alina C. Hilger

Publikováno v: Frontiers in Pediatrics, Vol 10 (2022)

Congenital lower urinary tract obstructions (LUTO) are most often caused by posterior urethral valves (PUV), a male limited anatomical obstruction of the urethra affecting 1 in 4,000 male live births. Little is known about the genetic background of P

Externí odkaz: https://doaj.org/article/2b86e5686ed44e1c9b5c76e66ebae75d

The Transition of Care for Patients with Anorectal Malformations and Hirschsprung Disease

Autor: Cristiano Violani, Caterina Grano, Mariana Fernandes, Alessio Pini Prato, Wout F. J. Feitz, Rene Wijnen, Michelle Battye, Nicole Schwarzer, Annette Lemli, Duccio Cavalieri, Dalia Aminoff

Publikováno v: European Journal of Pediatric Surgery, 33(3), 191-197. Thieme Medical Publishers
European Journal of Pediatric Surgery, 33, 3, pp. 191-197

This study aimed at evaluating how transition of care is currently being organized in the European Reference Networks (ERNs) health care providers (HCPs) in pediatric areas and in the Anorectal Malformation Network (ARM-Net) Consortium hospitals. An

Externí odkaz: https://explore.openaire.eu/search/publication?articleId=doi_dedup___::174793638d7d9ea1b3dd70b718e0b0cc
https://pure.eur.nl/en/publications/d58c877e-e406-4576-a1fb-b53dd839f02e

Kidney injury rates after unilateral nephrectomy in childhood-a systematic review and meta-analysis

Autor: Sander Groen in ‘t Woud, Alessandro Gobino, Nel Roeleveld, Lambert P W J van den Heuvel, Wout F J Feitz, Loes F M van der Zanden, Michiel F Schreuder

Publikováno v: Nephrology, Dialysis, Transplantation, 37, 2457-2473
Nephrology, Dialysis, Transplantation, 37, 12, pp. 2457-2473

Background Unilateral nephrectomy is a relatively common procedure in children which results in a solitary functioning kidney (SFK). Living with an SFK predisposes to kidney injury, but it remains unknown which children are most at risk. We aimed to

Externí odkaz: https://explore.openaire.eu/search/publication?articleId=doi_dedup___::346ca923da7965cc139f081e4339f9f7
https://pubmed.ncbi.nlm.nih.gov/35099015

Moderate agreement between bladder capacity assessed by frequency volume charts and uroflowmetry, in adolescent and adult enuresis patients

Autor: Ilse, Hofmeester, Astrid E, Brinker, Martijn G, Steffens, Wout F J, Feitz, Marco H, Blanker

Publikováno v: Neurourology and urodynamics. 36(3)

Frequency Volume Charts (FVC) are recommended for the evaluation of enuretic patients. Although this is a good instrument for the assessment of functional bladder capacity, it is known that patient compliance could introduce problems. Therefore, we a

Externí odkaz: https://explore.openaire.eu/search/publication?articleId=pmid________::8042dd06a969e2c24c35ee3e356e71b1
https://pubmed.ncbi.nlm.nih.gov/27060883