UK Islet Autoantibody Registry (UKIAb)

Research summary

We aim to establish a registry of children young people and adults who are IAb positive. We will use the registry to address the following research questions: 1. What is the lived experience of being IAb positive,or having a child who is IAb positive? 2. What are IAb positive individuals’ and their families’ information and support needs? 3. What are the frequency and risk factors associated with clinical outcomes,including progression to Stage 3 T1D in a UK cohort 4. How does the UK IAb positive cohort compare to cohorts from international registries? 5. How do the number of individuals who consent to the registry,compare to those that are enrolled? 6. What is the health service usage in individuals without clinical diabetes who are IAb positive and not on insulin treatment? To answer these questions,we will: • Undertake an interview study with IAb positive individuals and their parents/guardians to understand the lived experience of being IAb positive,and determine individuals’ information and support needs • Collect UK data on progression to clinical disease and use of health services and resources • Offer participation in trials testing prevention,support,and new treatments The programme is composed of four work packages: • WP1: Establishing the registry OBJECTIVES: 1. To develop a UK registry of children,young people and adults with ≥ 1 IAb Baseline demographic,health,immunological,genetic and family history data will be collected. We will also record the rate of consent to the registry (and IAb test requests) vs enrolment,so that we can gauge the level of need/desire for IAb testing. This will be invaluable information for future grant applications and the development of the registry. • WP2: Living with a positive antibody result OBJECTIVES: 1. To understand the lived experience of being IAb positive or having a child who is IAb positive 2. To identify people’s information and support needs when living with an IAb positive result and create a position statement informed by our findings A sub-set of registry participants,and/or parents of children in the registry,who have been living with a positive antibody result for ≥ 6 months will be invited to an in-depth interview. The aim of the interview is to learn how people feel when living with the knowledge of being IAb positive (or having a child who is IAb positive),and what information and support they need,so that we can better understand and tailor the support required for people at risk for T1D in the future,and help shape future care policy and delivery. We will seek to interview approximately 12–15 parents/caregivers,12-15 young people (aged < 18 years) and 12–15 adults. • WP3: Data linkage and analysis OBJECTIVES: 1. Undertake data linkage with routinely collected data contained in NHS clinical datasets in a Trusted Research Environment (TRE) to describe the frequency and risk factors associated with clinical outcomes,including incident diabetes defined by use of insulin,and the frequency and duration of health resource usage 2. Compare the status of being IAb positive on health service usage and clinical outcomes using a comparator cohort,matched on age,sex and GP practice/hospital site,and duration of follow-up,not known to be IAb positive,for example from CPRD/HES • WP4: Assessing risk progression in a UK cohort OBJECTIVES: 1. Compare IAb and demographic/biochemical characteristics to similar cohorts from international registries 2. Assess risk of progression in at-risk individuals in the UK (using existing and prospectively collected data)

Principal Investigator

Dr Rachel Besser

Contact us

Email: childrensresearch@ouh.nhs.uk

IRAS number

347853