Research

The Sydenham’s Chorea Association is keen to support best practice in the diagnosis and treatment of Sydenham’s chorea (SC) by encouraging research. Although it has been known for hundreds of years, SC is now a rare condition in many countries and there is a lack of good scientific evidence to guide clinical staff. Dr Michael Morton from the University of Glasgow has kindly summarised some of the research we have been involved in.

Mental health and SC

• Dr Mallika Punukollu, a senior trainee in the Psychiatry department at the Royal Hospital for Sick Children, Glasgow, led a systematic review of the evidence of psychiatric disorders as part of SC. Together with Liaison Nurse Nadine Mushet, under supervision from child psychiatrists Dr Michael Morton & Prof Chris Gillberg, she then undertook a study of the experience of the children with SC referred to the Neuropsychiatry Clinic. Family involvement was achieved by inviting known families to a meeting to discuss the design of the research. Later on, the research team responded to parent’s requests to organise a meeting to feedback and present information on SC with the help of colleagues in Paediatric Neurology and Paediatric Cardiology at the Royal Hospital for Sick Children, Yorkhill, Glasgow.

Surveillance study of SC in the UK & Ireland

• Glasgow professionals involved with SC sought collaborators to extend their research. The patient and family perspective from the SCA together with the charity’s successful fundraising enabled the setting up of a research team (based in Exeter, but with strong inputs from Glasgow, Dublin and London). This team completed a surveillance project over 2 years contacting paediatricians and child psychiatrists across the British Isles to find out about the current experience of SC in the UK and Ireland. A video of Drs Delgado-Love and Mitrofan discuss their study at our online education and awareness day 2023 here.

International Connections

   Italy

      Involvement of Italian parents began in 2015. The information for parents, available from SCA website, was found helpful in supporting Italian families.

• A parent (Emanuela Ferrarin), with the supervision of paediatricians from north-east Italy, developed an information guide for Italian families based on the information available from SCA website. The guide is accessible from the SCA as well as from SICuPP (Società Italiana delle Cure Pediatriche Primarie – Italian Society of Primary Paediatric Care) website.
  
• Italian parents surveyed their experience on problematic aspects of antibiotic prophylaxis with benzylpenicillin injections, which have been published in a paediatric journal. The issue is expected to be evaluated by the country’s medicines regulatory body.
• Discussion arising from questions raised by young women with SC and their families prompted Mrs Ferrarin to make a literature review of the effects of hormone (eg contraceptive) medicines on SC, which is being prepared for publication.

   Global

• Delphi process – our online community has highlighted variation in practice in the diagnosis and treatment of SC. This has prompted the surveillance research team to set up an international review of clinical practice in the diagnosis and treatment of SC. Led by clinicians from the UK, Singapore, Australia and Italy, with a strong input from us, all of the available published information about SC is being gathered and the Delphi process used to draw out the agreed best practice, as well as identify areas of future research.