Clinical Care Network

All patients with juvenile myositis deserve the best care possible.

The Cure JM Clinical Care Network links patients to top physicians in the U.S. and globally who are actively pursuing better treatments and a cure for juvenile myositis.

Lucy Wedderburn, MBBS, PhD

Lucy Wedderburn, MBBS, PhD, FRCP, MRCPCH

University College London, Great Ormond Street Hospital for Children
London, England

Lucy Wedderburn is a Professor in Paediatric Rheumatology at UCL (Institute of Child Health) and a Consultant at Great Ormond Street Hospital (GOSH).

She trained in Cambridge and then London in Immunology and Rheumatology and then spent time training in science in the University of Stanford, USA, before returning to University College London (UCL) and GOSH on a Wellcome Trust Fellowship. She has been at GOSH for more than 20 years as a consultant.

The Rheumatology department at GOSH provides highly specialist care for diagnosis, education, treatment and follow-up for children with Juvenile dermatomyositis (JDM) and other forms of juvenile myositis (JM). The Clinical Service for JDM is led by Dr Charris Papadopoulou. There is an inpatient 9 bed ward capacity dedicated to children with autoimmune diseases. There is also a dedicated multidisciplinary JDM outpatient clinic which takes place every two weeks, where children with JDM and other forms of myositis are seen by a doctor, physiotherapist and the Clinical Nurse Specialist. At diagnosis, if indicated, JDM patients are admitted to Pelican Ward and have all investigations needed including imaging (chest, x-ray, MRI, ultrasound, speech and swallow assessment), pulmonary function tests, echocardiography and ECG, muscle biopsy (open and needle biopsy by interventional radiologist). JDM patients are also assessed by a highly specialised physiotherapist and a specialised exercise program is set up. While an inpatient, children attend the gym for an intensive rehabilitation program twice a day. They are also assessed by occupational therapist; psychologist and each patient has a named dedicated CNS. A play therapist and social worker are also available if needed. Patients undergo specialised laboratory exams including myositis specific antibodies, Interferon related gene assay and genetic testing if indicated. Children are also able to attend school and take part in other activities during their stay at GOSH. After discharge, children are followed up in the outpatient clinic. All JDM patients seen at GOSH are recruited to the UK-wide Juvenile Dermatomyositis Biomarker and Cohort Study, which is led by Professor Wedderburn. Established in 2000, the study collects longitudinal data and samples which support multiple national and international genetic, immune antibody, and muscle pathology studies in JDM and myositis. Once a year, we host a family day for our patients, their siblings parents and carers. Once patients reach the age of 16 years old, there is an established transition pathway and their care to transitioned to University College London Hospital (UCLH) adolescent rheumatology team.

The GOSH rheumatology team looks after more than 200 active patients with JM aged 1-16 years, while more than 650 patients have been recruited to the JDCBS. Median age at presentation is approximately 6 years and girls are more frequently affected than boys as expected. All MSA groups are seen with NXP2 and TIF1G being the most prevalent. We cover all of North London, Essex and the counties around London, while we are accepting all difficult and challenging cases from across the UK and Gibraltar either as a second opinion or as overall care.

We run two dedicated JDM clinics per month. There are four streams in each clinic (4 highly specialised rheumatologists). There is also a teaching registrar stream supervised by the responsible consultant. These clinics are MDT as a highly specialized physiotherapist and a dedicated CNS are also attend the clinic. We see 16-20 patients/clinic. We also have once a week a new patient clinic, where we see newly diagnosed patients that do not require hospital admission. In case of emergency, we have a day case ambulatory unit, where JDM patients can be seen urgently. Finally, there is also once a week an emergency clinic where flaring JDM patients can be seen semi-electively.

All patients are seen by a highly specialised paediatric rheumatologist with experience in treating patients with JDM for more than 5 years. Moreover, there is a regular multi-disciplinary team (MDT) consortium where all difficult and challenging cases are discussed within the whole Rheumatology team and also with the attendance of respiratory, immunology, nephrology, ID experts. We currently have 5 Rheumatology clinical training posts (so called SpR), 2 clinical fellow posts and 2 international fellow posts. All trainees and fellows attend the JDM clinics (supervised by the responsible clinicians), receive training and teaching on measurement of disease and outcomes including the MMT8, CMAS and are trained to recruit patients to the JDCBS.

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