Sydenham's Chorea Surveillance Study v1
Research type
Research Study
Full title
Surveillance study of childhood/adolescent Sydenham's chorea in the UK and the Republic of Ireland
IRAS ID
232694
Contact name
Tamsin Newlove-Delgado
Contact email
Sponsor organisation
Devon Partnership Trust
Duration of Study in the UK
4 years, 0 months, 0 days
Research summary
Sydenham’s chorea is a disease affecting the brain that usually occurs in children and adolescents and causes abnormal movements, emotional and behavioural symptoms. The condition is associated with prior infection with the bacteria streptococcus and may severely impact on the child’s ability to carry out activities of daily living such as dressing, walking or writing. Whilst Sydenham’s chorea may resolve within six months, it can follow a relapsing course for up to two years. In Western Europe Sydenham’s chorea is considered a ‘rare disease’, but little is known about how frequently the disorder now occurs in the UK and the Republic of Ireland (ROI). Given the impact on the lives of patients and families, there is a clear need for a prospective study of new cases to examine the current pattern of the disorder, raise awareness and inform the planning of services. We plan to study the numbers, characteristics, management and outcomes of new cases of Sydenham’s chorea aged between 0 and 16 years in the UK and ROI. We will use the rare disease surveillance methodology set up by the British Paediatric Surveillance Unit and the Child and Adolescent Psychiatry Surveillance System. This involves asking paediatricians and psychiatrists to report cases to us when they first see a child or young person with symptoms of Sydenham’s chorea in their service. We will then send follow-up questionnaires to these clinicians at one year and two years after initial notification of the case to ask about investigations, management, recovery and other outcomes (such as educational). Our findings will fill the gap in scientific knowledge about the current pattern of Sydenham’s chorea in the UK and Ireland. This will support service development and planning, contribute to improving recognition of the disorder and facilitate pathways to appropriate investigation and treatment.
REC name
London - Bloomsbury Research Ethics Committee
REC reference
18/LO/0760
Date of REC Opinion
14 May 2018
REC opinion
Favourable Opinion