The “Gaps in the CDH Journey” project aims to improve the outcomes for children born with Congenital Diaphragmatic Hernia through identifying the Top 10 Research Priorities of people with a lived experience of CDH.
Please share our survey
Gaps in the CDH Journey – Marketing toolkit
Our Marketing Toolkit includes all of the information you need to share our survey including social media posts, suggested copy, tags, hashtags and links
DOWNLOAD: Gaps in the CDH Journey – Marketing Toolkit ZIPPED
Encourage participation
Use the images and suggested copy below to help share our survey – https://redcap.link/CDHResearchPriorities
Suggested copy
- Calling all healthcare workers and clinicians who have experience with Congenital Diaphragmatic Hernia. We need your help to shape the future research of this life-threatening condition that affects 1 in every 2,500 babies. https://redcap.link/CDHResearchPriorities
- Help shape the future direction of Congenital Diaphragmatic Hernia research! https://redcap.link/CDHResearchPriorities https://redcap.link/CDHResearchPriorities
- Complete this survey and help shape the future direction of Congenital Diaphragmatic Hernia research. https://redcap.link/CDHResearchPriorities
- By completing this survey, you can help improve the health and wellbeing of babies diagnosed with Congenital Diaphragmatic Hernia. https://redcap.link/CDHResearchPriorities
- Help us determine the top research priorities for families affected by Congenital Diaphragmatic Hernia by completing this short survey. https://redcap.link/CDHResearchPriorities
- This online survey aims to improve the health and wellbeing of those affected by Congenital Diaphragmatic Hernia (CDH). Have your say today https://redcap.link/CDHResearchPriorities
- Congenital Diaphragmatic Hernia is one of the more common congenital birth defects, having a 50% survival rate for babies diagnosed before birth. You can help improve the health and wellbeing for babies born with CDH by completing this short survey. https://redcap.link/CDHResearchPriorities
- The “Gaps in the CDH Journey” project will identify questions and priorities of people with a lived experience of Congenital Diaphragmatic Hernia, their caregivers, and health care providers. https://redcap.link/CDHResearchPriorities
- Calling all parents who have experience with Congenital Diaphragmatic Hernia. We need your help to shape the future research of this life-threatening condition that affects 1 in every 2,500 babies. https://redcap.link/CDHResearchPriorities
Hashtags
Please use hashtags on social media posts
#CongenitalDiaphragmaticHernia #CDH #CDHResearchPriorities #CDHTop10 #CDHResearch #CDHPriorities #CongentialDiaphragmaticHerniaResearch #CDHAustralia #CDHSFS #MCRI
Social media handles (for tagging)
CDH Australia
Facebook: @CDHAustralia
Instagram: @cdh_australia
Twitter: @CDHAustralia
LinkedIn: @CDH Australia
Murdoch Children’s Research Institute
Facebook: @Murdoch Children’s Research Institute – MCRI
Instagram: @murdoch_childrens
Twitter: @MCRI_for_kids
LinkedIn: @Murdoch Children’s Research Institute (MCRI)
James Lind Alliance
Twitter: @LindAlliance
Gaps in the CDH Journey
Twitter: @CDHTop10
Links
Online survey link (short bitly): https://redcap.link/CDHResearchPriorities
Online survey link (full): https://redcap.mcri.edu.au/surveys/?s=APNDYK78NE8AELF7
MCRI Website https://www.mcri.edu.au/research/projects/cdh-research-priorities
James Lind Alliance: https://www.jla.nihr.ac.uk/top-10-priorities/
CDH Australia website: https://cdh.org.au/cdh-information/cdh-research/
Online survey dates
Phase 1: Open 13 November 2022 – Close 16 January 2023
The “Gaps in the CDH Journey” project is a collaboration between the Murdoch Children’s Research Institute and CDH Australia, supported by the James Lind Alliance.
This project’s vision is to improve the outcomes for children born with CDH through understanding the research priorities of people with a lived experience of Congenital Diaphragmatic Hernia in Australia.
The result will be the identification of the Top 10 Priorities for CDH Research in Australia.
The Top 10 Priorities will be published and shared with key groups such as research funders, healthcare providers, hospitals, research institutes, researchers, and the wider community.
By identifying, prioritising, and sharing the needs and questions of people with CDH, their families and healthcare providers our goal is to inspire further research, influence future care, and improve outcomes and wellbeing of those diagnosed with CDH in Australia.
This is your chance to have a direct and meaningful role in optimising the outcomes of babies born with, and those affected by CDH.
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