UNICORNS: Uveitis in childhood prospective national cohort study protocol

F1000Res. 2023 Aug 30:9:1196. doi: 10.12688/f1000research.26689.2. eCollection 2020.

Abstract

Background: Childhood uveitis is a rare inflammatory eye disease which is typically chronic, relapsing-remitting in nature, with an uncertain aetiology (idiopathic). Visual loss occurs due to structural damage caused by uncontrolled inflammation. Understanding of the determinants of long term outcome is lacking, including the predictors of therapeutic response or how to define disease control. Aims: To describe disease natural history and outcomes amongst a nationally representative group of children with non-infectious uveitis, describe the impact of disease course on quality of life for both child and family, and identify determinants of adverse visual, structural and developmental outcomes. Methods: UNICORNS is a prospective longitudinal multicentre cohort study of children newly diagnosed with uveitis about whom a core minimum clinical dataset will be collected systematically. Participants and their families will also complete patient-reported outcome measures annually from recruitment. The association of patient (child- and treatment- dependent) characteristics with outcome will be investigated using logistic and ordinal regression models which incorporate adjustment for within-child correspondence between eyes for those with bilateral disease and repeated outcomes measurement. Discussion: Through this population based, prospective longitudinal study of childhood uveitis, we will describe the characteristics of childhood onset disease. Early (1-2 years following diagnosis) outcomes will be described in the first instance, and through the creation of a national inception cohort, longer term studies will be enabled of outcome for affected children and families.

Keywords: Child; Prospective Cohort; Quality of Life; Uveitis; Vision.

MeSH terms

  • Cohort Studies
  • Humans
  • Longitudinal Studies
  • Prospective Studies
  • Quality of Life*
  • Rare Diseases
  • Uveitis* / epidemiology
  • Uveitis* / therapy

Grants and funding

SK and ALS are supported by an NIHR Clinician Scientist award [CS-2018-18-ST2-005]. JSR is supported in part by the NIHR BRC based at Moorfields Eye Hospital NHS Foundation Trust and UCL Institute of Ophthalmology, and an NIHR Senior Investigator award. This work was undertaken at UCL Institute of Child Health/Great Ormond Street Hospital for children which received a proportion of funding from the Department of Health’s NIHR Biomedical Research Centres funding scheme.