Band 6 Paediatric Rheumatology Clinical Nurse Specialist to undertake 4 hours per week of research activity for the next three years in the cohort studies for children and young people with rare rheumatological disease

A2002525

The Paediatric Rheumatology team has been instrumental in supporting multi-centre national registry studies for specific rheumatological conditions at the University of Manchester, University of Liverpool, and University College London. Data collection began several years ago, with 253 patients from Leeds recruited to these studies. The primary aim of the registry studies is to collect real-time data on the patient journey of these rare conditions, focusing on disease onset, medication use and response, patient outcomes, and other relevant factors. Given the size of the population cared for at LTHT, it is crucial to follow these patients and recruit them to the registries to contribute to the national dataset and further research opportunities into rare rheumatological conditions.

Registries for juvenile arthritis began in the early 2000s with limited funding, but this support ceased towards the end of 2018. Continued changes to funding have resulted in no dedicated research nurse time within the Children’s Research Team to submit high-quality registry information, leading to a low volume of data submission.

The team aims to rebuild a solid framework of regular research activity to become more self-sustaining. They specifically wish to continue recruiting to the very rare disease registries, which contribute to the national dataset and enable various studies to enhance our knowledge and understanding of these diseases. The ultimate ambition is for the service to be recognised among national colleagues as being at the forefront of cutting-edge research projects, rather than missing out on significant potential.

Lead Researcher	Dr Kirsty Haslam Consultant Paediatric Rheumatologist
Co-Researchers	TBC
Host Organisation	Leeds Children’s Hospital Leeds Teaching Hospitals NHS Trust
Grant Amount	£10,832.67
Start Date	28/08/2024
Estimated Duration	36 months
Impact Areas	Rare diseases
Tags/key notes	Musculoskeletal