Advisory roles and Patient Engagement
For many years CDH UK has taken part in the development of standards of care, recommendations, reviews and information for patients. We have also provided focus groups for researchers and for the creation of our own information for patients and their families.
More recently we have become Patient Representatives and advisors for National and International reference networks such as SCANS (Scottish Congenital Anomalies Network Service) and ERNICA (European Reference Network for Inherited and Congenital Anomalies).
In 2018 we developed an idea for a new Alliance to encourage and enable collaboration with organisations supporting Congenital Diaphragmatic Hernia (CDH), Gastroschisis, Omphalocele/exomphalos and Congenital Hiatus Hernia (CHH) as a direct result of our work with ERNICA and a need to encourage more patient engagement in these other abdominal wall and diaphragmatic defects.
Here are some of our past and present contributions.
- FASP (Fetal Anomaly Screening Programme) Antenatal Care Pathway & Patient information leaflets
- MBRRACE UK Lay Reports, review and recommendations https://cdhuk.org.uk/wp-content/uploads/2019/08/Perinatal-CDH-Report-2014-Full.pdf
- GIFT-Surg Patient & Public Advisory Group
- BAPM working Group for A CDH Care Pathway
- NHS Scotland – SDHCN (Scottish Diaphragmatic Hernia Clinical Network) Review
- SCANS (Scottish Congenital Anomalies Network Service) Launch
- ERNICA (European Reference Network for rare and Inherited Congenital Anomalies) founding patient expert member
- ePAG – Eurordis Patient Advocacy Group member