About The Paediatric Rheumatology Clinical Studies Group
Paediatric rheumatology refers to the study of rheumatic diseases in children and young people. Rheumatic diseases include conditions that cause pain and swelling in joints, such as arthritis. In children and young people, the most common form of arthritis is known as Juvenile idiopathic arthritis (JIA).
1 in every 1,000 young people in the UK has arthritis. Arthritis in young people can be complex. Its severity varies from one person to another, and symptoms can alter greatly from day to day. The experience of growing up with arthritis can have a negative impact on all aspects of a young person’s development, and too many don’t have access to the treatments, information and support they need.
Founded in 2007, the Paediatric Rheumatology Clinical Studies Group aims to make real headway in the fight against arthritis and other rheumatic diseases, in children and young people by strengthening research in the field, identifying areas for development, and providing expert advice to help researchers produce high quality research proposals. The group works in partnership with the National Institute of Health Research’s (NIHR) clinical research network which includes researchers, allied health professionals and nurses specialising in paediatrics.
Recently the group has been gathering information for their review of priority research areas by engaging with young people, researchers, and health care professionals.
The Clinical Studies Group has six Topic Specific Groups related to certain conditions. These are open research groups welcome to healthcare professionals, parents and young people with arthritis. The groups are listed below.
- Juvenile idiopathic arthritis
- Juvenile dermatomyositis (JDM)
- Juvenile scleroderma
- Juvenile systemic lupus erythematosus (JSLE)
- Non-inflammatory MSK conditions
- Auto-inflammatory and vasculitis
Professor A. V. Ramanan is a consultant paediatric rheumatologist whose clinical and research interests include the genetics, treatment (clinical trials), and complications of juvenile idiopathic arthritis (JIA) and JIA associated uveitis. His clinical work is mainly based at Bristol Royal Hospital for Children. He is also Associate director of the Experimental Arthritis Treatment Centre for Children and chief investigator of a number of clinical studies.
Professor Ramanan was involved in the ground-breaking SYCAMORE trial, which resulted in a treatment for uveitis becoming available for children in >70 countries worldwide.
Dr Clare Pain is a Consultant in Paediatric Rheumatology, at Alder Hey Children’s NHS Foundation Trust Hospital. Her areas of clinical and research expertise include both juvenile scleroderma and Behcet’s disease. Clare is an Associate Director of the Experimental Arthritis Treatment Centre for Children (Behcet’s and scleroderma workstreams) and chief investigator on a number of clinical studies.
Group membership includes parents, young people, and support service providers who provide the important perspective of people with arthritis (collectively known as the consumer group). The group also includes representatives of medical health care professionals, nurse and allied health professionals, paediatric rheumatology trainees, and of the national network BANNAR.
- Professor Athimalaipet Ramanan. Co-chair, Lead Consultant in Paediatric Rheumatology
- Dr Clare Pain. Co-Chair, Consultant Paediatric Rheumatologist, Alder Hey Hospital
- Dr Dan Hawley. Consultant Paediatric and Adolescent Rheumatologist, Sheffield Children’s NHS Foundations Trust
- Catherine Wright. Consumer group
- David Parker. Consumer group
- Christina Pringle. Consumer group
- Victoria Harbottle. Paediatric Physiotherapist, Newcastle Upon Tyne Hospitals NHS Foundations Trust
- Dr Angela Midgley. Basic Scientist, University of Liverpool
- Dr Kate Armon. Consultant Paediatrician, Cambridge University Hospitals NHS Foundations Trust
- Dr Alice Cai. Psychologist, University of Greenwich
- Dr Raja Padidela. Consultant Paediatric Endocrinology, Royal Manchester Children’s Hospital
- Udeme Ohia. Lead Clinical Trials Pharmacist, Alder Hey Children’s Hospital
- Dr Flora McErlane. Consultant in Paediatric Rheumatology, The Newcastle Upon Tyne Hospitals NHS Foundation Trust
- Dr Nadia Corp. Research Fellow, Keele University
- Charlene Foley. Trainee Representative
- Dr Ethan Sen. Consultant in Paediatric Rheumatology, Great North Children's Hospital, Newcastle upon Tyne
- Dr Neil Martin. Consultant in Paediatric Rheumatology, NHS Greater Glasgow and Clyde
- Heather Smee. Nurse Representative
- Jasmine Davey. Consumer group
- Stephanie Parker. Consumer group
Group meetings and events
The Group aims to meet monthly by telephone meeting and twice yearly at face to face meetings. The minutes of these monthly meetings are accessible here.
If you would like to attend or find out more please contact firstname.lastname@example.org.