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Juvenile Idiopathic Inflammatory Myopathies (jIIM)

Juvenile Idiopathic Inflammatory Myopathies (jIIM) are a group of rare conditions that cause inflammation in the muscles, but can also affect the skin, blood vessels and other organs. Juvenile dermatomyositis (JDM) is the most common form of jIIM.

Juvenile Dermatomyositis Cohort Biomarker Study and Repository (JDCBS)

This UK network collects data and samples from patients with jIIM to learn more about the condition and develop better treatment for children. (Alder Hey PI: L. McCann)

Alder Hey is one of 17 centres contributing to this study. The JDCBS website has more information.

This registry, and other myositis registries in Europe (MYONET) and North America (Childhood Arthritis and Rheumatology Research Alliance - CARRA), collect a core set of information agreed by international consensus in previous work (CI: L. McCann). This allows the analysis of information from as many people as possible, collected in the same way, for this rare group of diseases.

MYOSCOPE

Funded by NIHR Research for Patient Benefit (RfPB) (CI: Liza McCann), this project is testing the feasibility of using a handheld tool in clinical practice for detailed imaging of nailfold blood vessels (nailfold capillaroscopy) in children with juvenile dermatomyositis. The nailfold is the tissue that attaches the nail to the rest of the skin. It will evaluate if seeing blood vessels in this way and subsequent reporting at University of Manchester / Salford Royal, helps patients, parents, and health care professionals in shared decision making and medicine adherence.

40 children have been recruited from Great Ormond Street and Alder Hey Hospitals. Invaluable input from a local patient / parent advisory group fundamentally changed the research design of this study, and this group have continued to work with this project.

Developing international recommendations for the management of juvenile idiopathic inflammatory myopathies (JIIM)

A cross-party initiative: International Myositis Assessment and Clinical Studies Group (IMACS), Paediatric Rheumatology European Society (PReS), CARRA JDM working groups facilitated by an IMACS Scientific Interest Group (SIG). 

This project, funded by Cure JM (CI: L. McCann), aims to develop international recommendations for the management of JIIM to help optimise and standardise care and achieve better outcomes for patients and their families. A key aim is to ensure partnership between patients / carers, physicians and allied health care professionals, so that these recommendations are meaningful to patients and their carers.

Other collaborations

L. McCann works with colleagues nationally and internationally in studies that aim to improve the care of children with jIIM.

Recent projects have included developing a Treat to Target approach for JDM, and work helping to code common data elements for core set activity measures in myositis. She has been working with a group in the UK, and internationally, to help develop clinical studies looking at the use of JAK inhibitors in JDM. Alder Hey will be participating in a clinical trial that is expected to open in 2025, led by the team at Great Ormond Street Hospital.