On the 14th of March, our Head of Training, Anne Rhodes, and CEO, Jon Arnold, attended the National Congenital Anomaly and Rare Disease Registration Service (NCARDRS) training conference to share their knowledge and expertise with staff.
NCARDRS is a Public Health England service that records congenital abnormalities and rare diseases across the whole of England. The objective of the service is to provide a resource for health professionals, supporting high quality clinical practice and research into congenital anomalies and rare diseases. The information provided by NCARDRS is also important for patients and carers, as it provides vital information about their disease or disorder.
Anne presented to coding staff, whose job it is to obtain, clinically code and validate data on rare disease cases. When it comes to diagnosis’ of congenital heart defects, it is imperative for coders to understand the most common defects, enabling them to interpret the cardiologists’ reports and input the data.
Anne says, “Medical reports can often be difficult to interpret. They may not actually give a diagnosis but instead describe the defect or combination of defects. This can leave the staff with the challenging task of coding them for their database. One of my aims was to help NCARDRS staff understand the vast array of different congenital cardiac anomalies and what other defects they may be associated with.”
Anne spent the morning talking through a number of presentations to the NCARDRS team starting with how the heart forms and describing the structure of a normal fetal heart. Following discussion on fetal circulation and adaptation to neonatal circulation, Anne then gave insight into the role of the sonographer, the guidelines they follow, and then talked about the different congenital heart defects that can be detected antenatally.
The staff were able to take away with them a list of medically recognised abbreviations and terminologies used in cardiac clinics.
The final presentation of the morning depicted a patient journey. This gave the staff a good insight into what the patient and family go through in not only reaching the diagnosis, but also options for the rest of the pregnancy, delivery and immediately following birth. Anne says, “The majority of the NCARDRS team to not have patient contact, so by exploring a patient journey, the family’s situation and diagnosis becomes tangible to the staff”. To expand on this, Jon gave a moving talk about his daughter Zoe’s story and his experience of being the parent of a child with congenital heart defects.
Anne wrapped up the conference with a quiz. She says, ‘I’d like to thank NCARDRS for inviting us to their training conference. I hope the staff found the material useful for the important work they undertake on a daily basis.’