Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
Review
. 2024 Feb;63(2):141-148.
doi: 10.1007/s00120-023-02242-x. Epub 2023 Dec 12.

["Epidemiology, diagnosis, treatment and follow-up of the bladder exstrophy-epispadias complex"]

[Article in German]
Anne-Karoline Ebert  1 , Franziska Wolff  2 , Julia Lackner  2
Affiliations
Review

["Epidemiology, diagnosis, treatment and follow-up of the bladder exstrophy-epispadias complex"]

[Article in German]
Anne-Karoline Ebert et al. Urologie. 2024 Feb.

Abstract
in English, German

The development of the new S3 guideline "Epidemiology, diagnosis, treatment and follow-up of the bladder exstrophy-epispadias complex" was funded by the German Innovation Fund of the Federal Joint Committee (G-BA). Despite the relatively low level of evidence of the identified literature, a systematic approach and consistent evaluation of the literature enabled the formulation of a large number of evidence-based recommendations across a variety of topics. In addition, a patient guideline is under development in order to disseminate the guideline recommendations and to enhance self-management and understanding among patients and their relatives. A needs analysis had been carried out in order to adequately assess the topics that are most important for patients and relatives. Upon completion of the German guideline, an English translation in cooperation with the e‑UROGEN network is planned.

Die Erstellung der neuen S3-Leitlinie „Epidemiologie, Diagnostik, Therapie und Nachsorge des Blasenekstrophie-Epispadie Komplexes“ wurde durch 2021 beantragte Forschungsgelder vom Innovationsfonds des Gemeinsamen Bundesausschusses (G-BA) ermöglicht. Wenngleich das Evidenzlevel der identifizierten Literatur vergleichsweise niedrig ist, konnten durch ein systematisches Vorgehen und eine konsequente Bewertung der Literatur eine Vielzahl von evidenzbasierten Empfehlungen zu vielen Themen formuliert werden. Zudem wird eine Patient*innenleitlinie erstellt, um die Leitlinienempfehlungen in die Breite zu bringen und das Selbstmanagement und Verständnis der Betroffenen und Zugehörigen zu fördern. Um die für Patient*innen wichtigen Themen in der Patient*innenleitlinie adäquat abzubilden, wurde im Vorfeld eine Bedarfsanalyse durchgeführt. Nach Abschluss der Arbeiten an der deutschen Leitlinie ist mit dem e‑UROGEN-Netzwerk eine Kooperation für eine englische Übersetzung geplant.

Keywords: Bladder exstrophy epispadias complex; Evidence-based medicine; Guideline development.

PubMed Disclaimer

References

Literatur

    1. Ebert AK (2017) The German research network CURE-Net: A benefit for patients with rare diseases. Urologe A 56(7):905–909. https://doi.org/10.1007/s00120-017-0403-7 - DOI - PubMed
    1. Joshi RS, Shrivastava D, Grady R, Kundu A, Ramji J, Reddy PP, Pippi-Salle JL, Frazier JR, Canning DA, Shukla AR (2018) A model for sustained collaboration to address the unmet global burden of bladder exstrophy-epispadias complex and penopubic epispadias: the international bladder Exstrophy consortium. JAMA Surg 153(7):618–624. https://doi.org/10.1001/jamasurg.2018.0067 - DOI - PubMed - PMC
    1. Weiss DA, Shukla AR, Borer JG, Sack BS, Kryger JV, Roth EB, Groth TW, Frazier JR, Mitchell ME, Canning DA (2020) Evaluation of outcomes following complete primary repair of bladder exstrophy at three individual sites prior to the establishment of a multi-institutional collaborative model. J Pediatr Urol 16(4):435.e1–435.e6. https://doi.org/10.1016/j.jpurol.2020.05.153 - DOI - PubMed
    1. Joshi RS, Eftekharzadeh S, Shukla AR, Ramji J, Hingorani SR, Canning DA, Pippi-Salle JL, Merguerian P, DeFoor WR Jr, Frazier JR, Weiss DA, Reddy PP (2023) Kidney function outcomes in patients after complete primary repair of bladder exstrophy and penopubic epispadias: Results from the international bladder exstrophy consortium. J Pediatr Urol 19(1):34.e1–34.e9. https://doi.org/10.1016/j.jpurol.2022.04.018 - DOI - PubMed
    1. Borer JG, Vasquez E, Canning DA, Kryger JV, Bellows A, Weiss D, Groth T, Shukla A, Kurtz MP, Mitchell ME (2017) Short-term outcomes of the multi-institutional bladder exstrophy consortium: Successes and complications in the first two years of collaboration. J Pediatr Urol 13(3):275.e1–275.e6. https://doi.org/10.1016/j.jpurol.2017.01.006 - DOI - PubMed

Supplementary concepts