UNICORNS: Uveitis in Childhood Prospective National Cohort Study

NCT ID: NCT05385757

Last Updated: 2024-10-04

Study Results

Results pending

The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.

Basic Information

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Recruitment Status

ACTIVE_NOT_RECRUITING

Total Enrollment

250 participants

Study Classification

OBSERVATIONAL

Study Start Date

2020-10-22

Study Completion Date

2026-12-31

Brief Summary

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Childhood uveitis (inflammation inside the eye) is an uncommon disorder that carries the risk of blindness. Inadequate treatment of active inflammation has been shown to be related to a poor outcome. There has been no population-based, prospective longitudinal study of all-cause childhood uveitis, with resultant limitations in the evidence base used to counsel affected families, balance treatment decisions, or plan further research. The aim of the study is to describe the characteristics of childhood-onset uveitis and describe outcomes. The investigators shall also aim to identify the socio-demographic, clinical, biological and treatment-related determinants of outcome. Early (1-2 years following diagnosis) outcomes will be described in the first instance: However, through the creation of a national inception cohort, the investigators shall enable longer-term studies of outcome for affected children and families. There will be no change to routine clinical care.

Detailed Description

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Background:

Childhood uveitis descriptive term for a group of rare inflammatory eye disease, which are typically chronic, relapsing-remitting in nature, and of uncertain aetiology (idiopathic). Visual loss occurs due to structural damage caused by uncontrolled inflammation. Understanding of the determinants of long-term outcome is limited, particularly 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. Participants and their families will also complete patient-reported outcome measures (PROMS) at study entry and annually from recruitment.

PROMS collected at baseline are:

* Strength and Difficulties Questionnaire (SDQ): this is to screen the emotional and behavioural aspects of the participants' lives
* Child Health Utility 9D (CHU9D): generic preference based measure of health related quality of life
* Children's Sleep Habits Questionnaire (CHSQ): this evaluates incidence of behaviours linked with typical paediatric sleep difficulties
* 100-mm General Evaluation (GE): visual analogue score 100mm long used to capture overall perception of the burden of disease

PROMS collected at year 1 and annually (subject to investigations of instrument redundancy) are:

* Child Health Utility 9D (CHU9D): generic preference based measure of health related quality of life
* 100-mm General Evaluation (GE): visual analogue score 100mm long used to capture overall perception of the burden of disease
* Paediatric Quality of life Score (PedsQL): a brief questionnaire used to evaluate health related quality of life in children
* Vision related quality of life metric - Children and Young People (VQoL\_CYP): these instruments captures the functional and broader impacts of living with a visual disability 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, the investigators 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 of outcome for affected children and families will be enabled.

Conditions

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Uveitis

Study Design

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Observational Model Type

COHORT

Study Time Perspective

PROSPECTIVE

Study Groups

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Childhood Uveitis

Children \<18 years old newly diagnosed with non-infectious uveitis

No interventions assigned to this group

Eligibility Criteria

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Inclusion Criteria

* Children newly diagnosed with uveitis (within previous 6 months)
* Age \< 18years

Exclusion Criteria

* Uveitis due to malignancy
* Uveitis due to ocular trauma (including iatrogenic, ie intraocular surgery)
* Uveitis due to confirmed ocular infection
* Children with developmental disorders or impairments which prevent their self-report of their function level or quality of life
Maximum Eligible Age

18 Years

Eligible Sex

ALL

Accepts Healthy Volunteers

No

Sponsors

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National Institute for Health Research, United Kingdom

OTHER_GOV

Sponsor Role collaborator

Institute of Child Health

OTHER

Sponsor Role lead

Responsible Party

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Responsibility Role SPONSOR

Principal Investigators

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Ameenat L Solebo

Role: PRINCIPAL_INVESTIGATOR

University College London (UCL) Great Ormond Street Institute of Child Health

Locations

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Belfast Royal Victoria Hospital NHS Foundation Trust

Belfast, , United Kingdom

Site Status

Birmingham Women's and Children's Hospital NHS Foundation Trust

Birmingham, , United Kingdom

Site Status

Royal Bournemouth Christchurch Hospitals NHS Foundation Trust

Bournemouth, , United Kingdom

Site Status

Bradford Teaching Hospitals NHS Foundation Trust

Bradford, , United Kingdom

Site Status

University Hospitals Bristol NHS Foundation Trust

Bristol, , United Kingdom

Site Status

Cambridge University Hospital NHS Foundation Trust

Cambridge, , United Kingdom

Site Status

Cardiff and Vale University Health Board Hospitals

Cardiff, , United Kingdom

Site Status

Mid Essex Hospital Trust

Chelmsford, , United Kingdom

Site Status

Ninewells Hospital

Dundee, , United Kingdom

Site Status

Princess Alexandra Eye Pavilion

Edinburgh, , United Kingdom

Site Status

Royal Children's Hospital

Glasgow, , United Kingdom

Site Status

James Paget University Hospitals NHS Foundation Trust

Great Yarmouth, , United Kingdom

Site Status

Hull University Teaching Hospitals NHS Trust

Hull, , United Kingdom

Site Status

Leeds Teaching Hospitals NHS Trust

Leeds, , United Kingdom

Site Status

Alder Hey Hospital NHS Foundation Trust

Liverpool, , United Kingdom

Site Status

Moorfields Eye Hospital NHS Foundation Trust

London, , United Kingdom

Site Status

Royal Free London NHS Foundation Trust

London, , United Kingdom

Site Status

St Thomas' Hospital

London, , United Kingdom

Site Status

Great Ormond Street Hospital NHS Foundation Trust

London, , United Kingdom

Site Status

Maidstone and Tunbridge Wells NHS Trust

Maidstone, , United Kingdom

Site Status

Manchester University NHS Foundation Trust

Manchester, , United Kingdom

Site Status

Newcastle Upon Tyne Hospitals NHS Foundation Trust

Newcastle, , United Kingdom

Site Status

Norfolk and Norwich University Hospitals NHS Foundation Trust

Norwich, , United Kingdom

Site Status

Nottingham University Hospitals NHS Trust

Nottingham, , United Kingdom

Site Status

Oxford University Hospitals NHS Foundation Trust

Oxford, , United Kingdom

Site Status

Sussex Eye Hospital and Royal Alexandra Children's Hospital

Redhill, , United Kingdom

Site Status

Sheffield Children's Hospitals NHS Foundation Trust

Sheffield, , United Kingdom

Site Status

University Hospital Southampton NHS Foundation Trust

Southampton, , United Kingdom

Site Status

Southend University Hospital NHS Foundation Trust

Westcliff-on-Sea, , United Kingdom

Site Status

Royal London Hospital

Whitechapel, , United Kingdom

Site Status

York Teaching Hospital NHS Foundation Trust

York, , United Kingdom

Site Status

Countries

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United Kingdom

References

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Kellett S, Rahi JS, Dick AD, Knowles R, Tadic V, Solebo AL. UNICORNS: Uveitis in childhood prospective national cohort study protocol. F1000Res. 2023 Aug 30;9:1196. doi: 10.12688/f1000research.26689.2. eCollection 2020.

Reference Type BACKGROUND
PMID: 38435080 (View on PubMed)

Provided Documents

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Document Type: Study Protocol and Statistical Analysis Plan

View Document

Related Links

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Other Identifiers

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258638

Identifier Type: -

Identifier Source: org_study_id

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