Rheumatic Disorders

Rheumatic Disorders

research_patient_participation.jpgAlder Hey looks after young patients with a variety of rheumatic disorders, including inflammatory conditions of the joints or soft tissue (arthritis), autoimmune conditions, fever syndromes, hereditary disorders of connect tissue and mechanical joint problems.

These conditions can have a huge impact on our patients and their families. Early diagnosis and the use of the best treatments is vital to achieving the best outcome.

Alder Hey’s multi-disciplinary team provides the highest level of care for young people with these conditions. All of our senior rheumatology clinicians have a very strong research portfolio and peer reviewed publication record.

The Clinical Academic Department of Paediatric Rheumatology based at Alder Hey is one of the UK’s leading centres and it has an emerging international reputation in translational research in Paediatric Rheumatology.

Alder Hey is the UK’s first and only Centre of Excellence for Childhood Lupus and Coordinating Centre for the UK’s JSLE Study Group, a multi-disciplinary translational research group investigating this archetypal, paediatric systemic autoimmune disease.

Alder Hey, in close partnership with the University of Liverpool and established collaborators from across the UK and beyond is the UK’s first Arthritis Research UK ‘Experimental Arthritis Treatment Centre for Children’. The Centre enables us to further improve the health and wellbeing of children with Arthritis and related rheumatic conditions. 

Key areas of study

  • Lupus
  • Juvenile-onset Dermatomyositis
  • Childhood-onset Scleroderma
  • Juvenile-Idiopathic Arthritis-related Uveitis

Experimental Arthritis Treatment Centre for Children

The Arthritis Research UK National Experimental Arthritis Treatment Centre for Children is based at Alder Hey and the University of Liverpool. The Centre aims to improve the health and wellbeing of children with Arthritis and related rheumatic conditions.

Working with the UK’s Paediatric Rheumatology Clinical Studies Group, the centre has identified four priority disease areas: JIA, Childhood Lupus, JIA–associated Uveitis (a potentially serious eye condition that can lead to blindness if untreated) and childhood bone diseases.

Juvenile Idiopathic Arthritis (JIA) is a type of inflammatory Arthritis which affects around 12,000 children and teenagers under the age of 17 in the UK, causing severe joint pain and stiffness and in some cases affecting the internal organs. Although modern medicines such as biological therapies usually developed initially for adult inflammatory Arthritis can also be effective in children, only a handful have been licensed and approved for children and young people.

The centre has internationally recognised expertise including in clinical pharmacology, drug safety science, personalised medicine, biostatistics and trials methodology and translational biosciences to support the development of better, safer medicines for children with Arthritis and bone disease. It has very strong collaborative links with its partner centres in Bristol, who will lead on studies of Uveitis and Sheffield, who lead the bone health theme. 

The Centre works closely with the pharmaceutical industry and a national network of world-leading research institutions to speed up the development of new treatments for children with Arthritis, by running small clinical trials of promising drugs currently in the pipeline that would otherwise take years to come onto the market. It also collaborates closely with experts in adult Arthritis in Liverpool, Newcastle, Glasgow and Oxford, as well as with the NIHR Moorfields Biomedical Research Centre.

In 2014, the national centre was awarded funding of over £1.25 million over five years from a number of sources. Arthritis Research UK have initially invested £225,000 over three years with the expectation of two further years of funding following interim review. The other funders have also made a five-year investment: Alder Hey Children’s Charity £375,000; Alder Hey Research Business Unit £245,000; the University of Liverpool’s Institute of Translational Medicine £276,000; NIHR Alder Hey Clinical Research Facility £50,000; Sheffield University £50,000 and Sheffield Children’s NHS FT £50,000.

Centre of Excellence for Childhood Lupus

Alder Hey became the UK’s first Centre of Excellence for Childhood Lupus in 2010. 

Childhood Lupus is a severe disease where the body’s immune system reacts to its own cells, causing autoantibodies to be produced and resulting in inflammation and damage to many organs of the body. There is no cure and despite advances in treatment, the damage to organs can be severe and occasionally life threatening. 

As a Centre of Excellence our patients, their families and the clinical team work in partnership in all aspects of care. Patients have the assurance that the team caring for them has been recognised nationally and judged independently by a charity whose remit is to support the needs and very best care of patients and their families. Alder Hey is also at the forefront of research aiming for better understanding and treatment of Lupus.

Alder Hey’s Centre of Excellence status was awarded by Lupus UK, the national charity supporting people with Lupus and their families. The Trust is leading the way in providing care for children with Lupus and also in undertaking clinical research to advance the knowledge and care of children with the disease.

Lily’s story

When three-year-old Lily’s knees first swelled up, she struggled to walk long distances. Although two operations helped with her Juvenile Idiopathic Arthritis temporarily, Lily was soon unable to walk at all and found it hard to play with other children.

“Her older sister Daisy would tell us that she’d seen Lily crying or sitting on her own at break times at school”, says Lily’s mum, Jane. “She was so reserved because she knew she just couldn’t join in. It was heart-breaking.”

Lily has been part of Alder Hey’s new drug trial since August 2013. Her family can’t believe the improvement. 

“We immediately felt that we’d turned a corner,” says Jane. “It was a big decision to put Lily on these new drugs but I trusted the doctors at Alder Hey and it’s really paid off. Not only has her condition improved but her confidence is so much better now too.”

Lily also developed the eye condition Uveitis and soon started taking part in clinical research for treating this condition. “The research team are brilliant and coming to Alder Hey is part of Lily’s routine now,” says Jane. “The injections don’t bother her so she actually looks forward to coming in to see all the nurses.”

Lily’s family and her medical team are hopeful that her condition will continue to improve and that she may eventually grow out of her Arthritis and Uveitis. Lily is currently practising for her 25 metre swimming badge: “These days you can hardly tell she has Arthritis at all,” says proud dad, Nick.

Alder Hey Children's Charity
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Alder Hey Children's Charity