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
. 2024 Dec 20;110(1):23-29.
doi: 10.1136/archdischild-2024-327108.

Top 10 research priorities for congenital diaphragmatic hernia in Australia: James Lind Alliance Priority Setting Partnership

Roberto Chiletti  1   2 , Courtney Vodopic  3 , Emiko Hunt  3 , Jess Lawer  3 , Monique Bertinetti  1   2 , Stephanie Malarbi  1   4 , Valerie Kyritsis  5   6 , Scott Petersen  7 , David Stewart  1   2 , Jean Hellstern  2 , Michael Stewart  1   4 , Leah Hickey  1   2 , David G Tingay  2   4 , Trisha M Prentice  8   2
Affiliations

Top 10 research priorities for congenital diaphragmatic hernia in Australia: James Lind Alliance Priority Setting Partnership

Roberto Chiletti et al. Arch Dis Child Fetal Neonatal Ed. .

Abstract

Objectives: The Gaps in the Congenital Diaphragmatic Hernia (CDH) Journey Priority Setting Partnership (PSP) was developed in collaboration with CDH Australia, James Lind Alliance (JLA) and the Murdoch Children's Research Institute to identify research priorities for people with CDH, their families and healthcare workers in Australasia.

Design: Research PSP in accordance with the JLA standardised methodology.

Setting: Australian community and institutions caring for patients with CDH and their families.

Patients: CDH survivors, families of children born with CDH (including bereaved) and healthcare professionals including critical care physicians and nurses (neonatal and paediatric), obstetric, surgical, allied health professionals (physiotherapists, speech pathologists and speech therapists) and general practitioners.

Main outcome measure: Top 10 research priorities for CDH.

Results: 377 questions, from a community-based online survey, were categorised and collated into 50 research questions. Through a further prioritisation process, 21 questions were then discussed at a prioritisation workshop where they were ranked by 21 participants (CDH survivors, parents of children born with CDH (bereaved and not) and 11 multidisciplinary healthcare professionals) into their top 10 research priorities.

Conclusion: Stakeholders' involvement identified the top 10 CDH-related research questions, spanning from antenatal care to long-term functional outcomes, that should be prioritised for future research to maximise meaningful outcomes for people with CDH and their families.

Keywords: Child Development; Intensive Care Units, Neonatal; Intensive Care Units, Paediatric.

PubMed Disclaimer

Conflict of interest statement

Competing interests: None declared.

Figures

Figure 1
Figure 1. Process diagram. PSP, priority setting partnership.
See this image and copyright information in PMC

Similar articles

See all similar articles

Cited by

References

    1. Edel GG, Schaaf G, Wijnen RMH, et al. Cellular origin(S) of congenital diaphragmatic hernia. Front Pediatr. 2021;9:804496. doi: 10.3389/fped.2021.804496. - DOI - PMC - PubMed
    1. Politis MD, Bermejo-Sánchez E, Canfield MA, et al. Prevalence and mortality in children with congenital diaphragmatic hernia: a multicountry study. Ann Epidemiol. 2021;56:61–9. doi: 10.1016/j.annepidem.2020.11.007. - DOI - PMC - PubMed
    1. O’Mahony E, Stewart M, Sampson A, et al. Perinatal outcome of congenital diaphragmatic hernia in an Australian tertiary hospital. Aust N Z J Obstet Gynaecol. 2012;52:189–94. doi: 10.1111/j.1479-828X.2011.01381.x. - DOI - PubMed
    1. Holden KI, Harting MT. Recent advances in the treatment of complex congenital diaphragmatic hernia-a narrative review. Transl Pediatr. 2023;12:1403–15. doi: 10.21037/tp-23-240. - DOI - PMC - PubMed
    1. Gupta VS, Harting MT, Lally PA, et al. Mortality in congenital diaphragmatic hernia: a multicenter Registry study of over 5000 patients over 25 years. Ann Surg. 2023;277:520–7. doi: 10.1097/SLA.0000000000005113. - DOI - PubMed

LinkOut - more resources