The CDH Patient Journey
We are very proud and excited to have had The CDH Patient Perspective Journey published in Frontiers in Pediatrics (neonatology section) in February 2023. We started to work on producing the patient journey in 2016 following a need to create one for the basis of the development of a CDH Mobile App we had started […]
CDH 2022 Event
CDH2022 is a follow on from previous symposia that is this time being held in Glasgow, Scotland. Bringing together Medical professionals, Patients Organisations and Researchers, it is the essential opportunity to hear the latest basic science and clinical research in congenital diaphragmatic hernia care. CDH UK is proud to be a sponsor at this event […]
CDH UK helps develop new guidelines to improve pregnancy trials
New guidelines to improve pregnancy trials will pave way for novel therapies for women and babies. A new grading system to monitor complications during clinical trials involving pregnant women, which will significantly improve their safety, has been co-developed by UCL researchers and an international team of experts including CDH UK. Clinical trials in pregnant women […]
Experts at CDH UK warn of ‘no deal’ Brexit effects
Chairperson of CDH UK Beverley Power, along with other Rare Disease experts wrote to The Lancet to voice their concerns of a no deal Brexit on the Rare disease community and in particular patients. The correspondence was published in The Lancet in December 2020 and the full letter can be read in our research hub. […]
The Journey of a Little Balloon
Many years ago a team based in Leuven, led by Professor Jan Deprest, set out on an incredible journey with the help of a little balloon. They set out to find out if survival rates could be improved in both severe and moderate cases of Congenital Diaphragmatic Hernia (CDH). The journey wasn’t easy and was […]
European Reference Networks (ERNs) What they are and how they work.
CDH UK is very proud to be a founding member of ERNICA which is just one of many European Reference Networks (ERNs). ERNICA was established in 2016 for Inherited and Rare Congenital Anomalies, which includes CDH. We are also a member of the ERNICA Advisory Board and the Scientific Committee. Being a part of this […]
CDH UK collaborates with the Global Paedsurg Project
WHAT IS THE GLOBAL PAEDSURG PROJECT? It is a multi-centre prospective cohort study of congenital anomalies to compare outcomes between LMICs and high-income countries (HICs) globally. What is a prospective cohort study? to search A prospective cohort study in a nutshell is a study design that follows over time a group of similar individuals (cohorts) who differ with […]
CDH UK partners with the DHREAMS Study
DHREAMS – what does the Acronym stand for? Diaphragmatic Hernia Research Exploration Advancing Molecular Science Where is the study based? The study is based at the Colombia University Medical Centre in New York and includes medical centres (hospitals) from across the US and other parts of the world. Wendy Chung, MD, PhD Principal Investigator Kennedy […]
Congenital Diaphragmatic Hernia International Symposium Meeting
CDH UK is proud to be a sponsor for the upcoming CDH International Meeting for Medical professionals and associated organisations on the 14th and 15th of November 2017 at Alder Hey Children’s Hospital, Liverpool. We particularly welcome patient Support Groups to this meeting. Full details as follows:1st Announcement Congenital Diaphragmatic Hernia International SYMPOSIUM Meeting – Liverpool […]
CDH UK funds vital research to help improve outcomes for CDH patients
We are very pleased to be able to announce that CDH UK has agreed to fund the following research projects that have undergone a peer review process by Sparks Children’s Medical Research Charity and will be fund monitored by Great Ormond St Children’s Charity.Building a functional muscle to repair congenital diaphragmatic hernia – Professor Paolo […]