Gaps in the CDH Journey

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.

Gaps in the CDH Journey - Online survey

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

 

 

 

 

 

 

  • 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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