Our research paper has been published!

Gaps in the CDH Journey research article published in the journal Archives of Disease in Childhood

 

In July 2022, we embarked on a collaborative research project with the Murdoch Children’s Research Institute (MCRI), supported by the James Lind Alliance.

 

The project framework was a Priority Setting Partnership (PSP), which brings patients, carers and healthcare professionals together in research. A PSP focuses on important questions for research in a particular condition or healthcare issue, which results in the top ten priorities for research.

 

We are proud to share that in June 2024 the project was finalised. The research project led to the Top 10 Research Priorities for CDH, which will direct future research to improve the specific 10 research priorities for the improved health and wellbeing for those born with CDH, and their families.

 

As a result of the research, several members of the project’s steering group have presented the findings of the research at multiple international conferences, and a journal article on the research has been published with Archives of Disease in Childhood,an international and peer-reviewed journal specialising in child health.

 

This research has been an enormous undertaking, which will positively impact the way that CDH research is prioritised and undertaken moving forward. It has been led by those directly impacted, affected and involved in CDH care and management.

 

We look forward to sharing the future research generated from this important collaborative project.

 

This research was funded through the generous donations provided to CDHA, and through in-kind contributions from the MCRI.

 

>> Scroll down to read the Top 10 Priorities

 

 

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FAQs

 

What is a Priority Setting Partnership (PSP)?

A PSP is where future research questions and focus areas are decided by those whom the research aims to help. In this case – those directly affected by, or involved in the care of, people diagnosed with CDH.

 

A PSP brings together patients, caregivers, and healthcare professionals to work together to identify and prioritise areas of health and care that could be answered by research. This informs researchers, and research funders about priorities so that they ensure their research is as meaningful as possible to those who need it.

Why was it decided to use CDHA funds to support this style of research?

This style of research better informs future researchers and research funders about priorities  – as decided by those who are most impacted and affected by CDH. The CDHA Board decided that this project would have positive long-term benefits to all affected by CDH by more clearly defining the research gaps in the CDH journey.

 

We were approached by some of the most knowledgeable CDH doctors and researchers to collaborate in this research and after multiple meetings, discussions and input from the CDHA community, we believed this was a positive use of our funds.

What was the process?

The project took place over 23 months, and included three main project stages.

 

The first stage involved an online survey, which was used to collect CDH-related questions for future research to answer. The survey was dispersed through the CDHA community, through the MCRI network, and through the networks of those on the steering group. The questions related to many aspects of the CDH journey, including diagnosis, antenatal preparation, postnatal treatment and future implications. All questions received via the survey were checked to determine if they had already been answered by existing research. The questions which were not were collated into the top 50 unanswered questions.

 

In the second stage, a second online survey was shared, asking participants to review the 50 unanswered questions, and to select and rank the 10 they felt most important. The survey was distributed amongst the same channels as in stage one of the project. All of the survey results were collated, and 21 top questions were put forward to the final Priority Setting Workshop.

 

The last stage of the research project was the Priority Setting Workshop. This workshop included 21 members (10 with lived CDH experience, and 21 medical professionals with experience in CDH care). The workshop saw small groups discuss the top 21 questions, and each group was directed to collectively decide their top 10 questions. This process was undertaken twice, with the groups changed around the second time. Each group’s responses were collated, to reveal the final Top 10 Research Questions.

Who was in the Steering Group?

The Steering Group was made up of CDH Australia Board Members, carers of children born with CDH, health professionals from hospitals around Australia (including the Director of Neonatal Medicine from Melbourne’s Royal Children’s Hospital), researchers from Murdoch Children’s Research Institute, and other notable research bodies across Australia.

What are the Top 10 Research Priorities?

  1. How can we optimise the neurodevelopmental outcomes of survivors of CDH?
  2. How does CDH impact feeding and gut health and how can these outcomes be improved?
  3. What follow-up and surveillance should patients with CDH receive (through childhood and adulthood)?
  4. How can we best support the immediate care (transition) of babies born with CDH?
  5. Which infants with CDH would benefit from ECMO and what is the optimal timing?
  6. What are the best strategies for managing pulmonary hypertension in CDH and when should they be used?
  7. What are the predictors of long-term outcomes in patients with CDH? 1
  8. How can we best support lung growth and function of patients with CDH during their initial hospital admission?
  9. What (if any) antenatal interventions improve outcomes?
  10. What are the long-term respiratory outcomes of CDH?

 

You can read more about these Top 10 Priorities, as well as the Top 21 questions put forth in the online journal article (free to access): Top 10 research priorities for congenital diaphragmatic hernia in Australia: James Lind Alliance Priority Setting Partnership

How has this research been used so far? What impact has it had?

Steering group members have attended numerous reputable medical conferences throughout 2024 to share this project. Feedback has been very positive, with some initial interest shown in further research.

 

The paper was also submitted and accepted as an article to Archives of Disease in Childhood, an international and peer-reviewed journal specialising in child health. This publication broadens the reach of our research and results.

What are the next steps?

We will continue to work with the members of the Steering Group and the MCRI to ensure the research is shared as broadly as possible. You can also help by sharing our research journey, the Top 10 Priorities for CDH Research, or by sharing the published journal article to your networks.

 

We are also in initial discussions with international CDH organisations to see how we can further the impact of this research.

 

Our thanks to the steering committee (especially Dr Trisha Prentice, JLA rep Tamara Rader, and Jean Hellstern), survey respondents, workshop facilitators and participants and of course to the donors and fundraisers who helped make it possible!

 

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