Gaps in the CDH Journey

Overview

The Gaps in the CDH Journey project will identify questions and priorities of people with a lived experience of Congenital Diaphragmatic Hernia (CDH), their caregivers, and healthcare providers.

CDH is a life-threatening condition caused by a baby’s diaphragm not forming properly during pregnancy, meaning abdominal organs can move into the space where the lungs and heart are.

This life-threatening condition affects 1 in every 2,500 babies and is one of the more common congenital birth defects. Australia’s current survival rate for babies diagnosed before birth is 50%.

There is currently no known cause or cure for CDH.

Take the survey

Your participation in this short survey can help shape the future direction of CDH research. 

Take survey

Information for participants

Stage one

The first stage of the project is now complete. In stage one, an online survey was used to collect CDH-related questions for future research to answer.

Questions related to many aspects of the CDH journey, including diagnosis, antenatal preparation, postnatal treatment and future implications.

All questions were then checked to see if they have been answered by existing research. *

* Existing research identified will be shared at the conclusion of this project.

Stage two

In this second stage of the project, participants are asked to review the ‘interim list of unanswered questions’ and select which they feel are the 10 most important questions. Participants will then be asked to rank these 10 questions in order of priority (from 1-10), where one is the most important question.

The top 15-20 questions from this survey will be put forward to our final Priority Setting Workshop in August, ultimately resulting in the identification of the “Top 10 CDH Research Priorities”.

The results will be shared and communicated with key groups such as research funders, researchers, patients and carers, and the wider research and policy community.

This will help increase the likelihood that the Top 10 will influence future research to improve outcomes and wellbeing of those with CDH, and to those connected to CDH patients.

All project methods and results will be publicised to ensure full transparency.

Take the survey

Your participation in this short survey can help shape the future direction of CDH research. 

Take survey

Research team

Funding

This project is proudly funded by CDH Australia for the duration of the project. Project completion is anticipated in 2023.

Collaborators

• CDH Australia
  Supporting Australian families in their Congenital Diaphragmatic Hernia journeys to ensure that no family faces CDH alone.
• The Royal Children’s Hospital Melbourne
  Improving the health and wellbeing of children and adolescents through leadership in healthcare, research and education.
• The James Lind Alliance (JLA)
  A non-profit making initiative; bringing patients, carers and clinicians together in JLA Priority Setting Partnerships.

Publications

Beck, V., Mayer, S., Klaritsch, P., Roubliova, X., Petersen, S. G., & Deprest, J. 2009). Perinatal diagnosis and therapy/Perinatal morphology Tracheal occlusion early in gestation leads to greater lung growth and improved remodeling of pulmonary arteries. A nitrofen rat model for congenital diaphragmatic hernia. Journal of Perinatal Medicine, 37. https://doi.org/10.1515/JPME.2009.270

Gunn-Charlton, J. K., Burnett, A. C., Malarbi, S., Moran, M. M, Hutchinson, E. A, Greaves, S., & Hunt, R. W. (2019). Neonatal neuroimaging after repair of congenital diaphragmatic hernia and long-term neurodevelopmental outcome. World Journal of Pediatric Surgery, 2(e000037).

Mayer, S., Klaritsch, P., Petersen, S. G., Done, E., Sandaite, I., Holger, T., Claus, F., & Deprest, J. A. (2011). The correlation between lung volume and liver herniation measurements by fetal MRI in isolated congenital diaphragmatic hernia: A systematic review and meta-analysis of observational studies. Prenatal Diagnosis, 31(11), 1086-1096. https://doi.org/10.1002/pd.2839

Mayer, S., Petersen, S. G., Klaritsch, P., Fieuws, S., Claus, F., & Deprest, J. (2009). 413: Meta-analysis of predictors for survival in isolated congenital diaphragmatic hernia using fetal MRI. American Journal of Obstetrics & Gynecology Poster session III Fetus, Prematurity, 200(6) Supplement, S159 https://doi.org/10.1016/j.ajog.2009.10.579

Thomas, J. T., Petersen, S. G., Hurrion, E., Gray, P. H., Bourke, C., Kumar, S., Gardener, G. (2015). Iatrogenic Congenital Diaphragmatic Hernia following Prenatal Pleuroamniotic Shunting. Fetal Diagnosis and Therapy. 40, 310-312. https://doi.org/10.1159/000381146

Tingay, D. G., & Kinsella, J. P. (2020). Heart of the Matter? Early Ventricular Dysfunction in Congenital Diaphragmatic Hernia. American Journal of Respiratory and Critical Medical Care, 200(12), 1462-1464. https://doi.org/10.1164/rccm.201909-1737ED