Ongoing support for the UK-wide JDM research study is essential for us to understand this rare disease better, and ultimately achieve better outcomes for patients. The research and clinical teams involved in the Juvenile Dermatomyositis Cohort & Biomarker Study around the UK would like to say a huge thank you to all the families who have been involved in fundraising for research into JDM.
The recent donations will go towards funding our study coordinator, which is a pivotal role in keeping this unique study going, which is one of the largest registries in the world. The person in this role is responsible for maintaining the website and database for the study.
The study coordinator supports researchers and members of the clinical teams across the UK who are working with the study, as well as international researchers who are collaborating with the study. They assist with the collection of data and samples for the study, as well as administrative tasks including ranging from grant reporting to organising study committee meetings and a national meeting that brings together researchers and members of the clinical teams involved in the study from around the UK. This individual also serves as the first point of call for the public and patients who may contact the study through the website, https://www.juveniledermatomyositis.org.uk, providing an invaluable signposting and information role for families and patients in need of help.
