Julia Melluish, an member of the PenCRU Family Faculty at the University of Exeter Medical School 

Exeter part of new £2.3m clinical trial to benefit children with neurodisability

The University of Exeter is part of a new £2.3m clinical trial called PARROT, led by UK researchers from the University of Liverpool and Alder Hey Children’s NHS Foundation Trust.

The NIHR-funded trial aims to find out whether long-term antibiotic treatment can reduce the impact that chest infections have on children with neurological impairment.

PARROT is the largest ever trial involving this group of children and aims to recruit 500 children and young people aged 3-17 years with neurological impairment who are at risk of repeated chest infections. Each participant will be involved for a maximum of 20 months. Participants will be split into two groups, one will receive an antibiotic called azithromycin and the other control group will receive a placebo.

PARROT aims to find out whether a 12-month treatment with azithromycin affects rates of hospital visits, infections, GP and A&E visits, prescriptions, the treatment of infections, and quality of life of both parent and child. To make it easier for families, follow-up assessments can be done remotely so families can complete study questionnaires at home and collect respiratory swabs themselves.

There are large numbers of children with conditions like cerebral palsy and Down Syndrome who are prone to chest infections which can result in prolonged stays in hospital and even premature death. Despite their impact on children, their families and health services, there is very little information on how best to prevent these repeated chest infections. Some doctors prescribe long-term antibiotics but we don’t really know whether this treatment makes any difference or not.

The trial is being coordinated by the Liverpool Clinical Trials Centre.  More information on the trial and how to participate can be found here https://parrot-trial.org.uk/. A map of hospitals participating in the trial can be found under the ‘sites’ tab.

Professor Christopher Morris, who leads PenCRU (Peninsula Childhood Disability Research Unit) at the University of Exeter Medical School, is a co-investigator on the trial contributing expertise on outcomes and family involvement: “It’s been a real privilege to plan this trial with parent carers of children with neurodisability. Their individual and collective perspectives have ensured we have considered how families will experience participating in the trial to minimising burden and making processes as acceptable as possible. The trial will provide vital information to ensure we provide optimum health care for children with neurodisability.”

Julia Melluish, a member of the PenCRU Family Faculty at the University of Exeter Medical School who is also a parent of 15 year old twin boys one of who has cerebral palsy, Julia says: “It’s been a real privilege to be involved in designing the PARROT trial. Repeated admissions to hospital for respiratory infections is a vitally important issue for many families like mine. As an established member of the PenCRU Family Faculty I know my experience as a parent carer is valued, respected, and appreciated. I feel the opinions of all the parent carers in the group have been heard by the research team and made a fundamental difference to the way the trial has been put together in terms of expectations on participants and the way the outcomes will be measured. The results of this trial could potentially lead to huge cost savings for the NHS and significantly improve the quality of life and chest health of vulnerable neurologically impaired children and young people. So we hope lots of families will want to, and feel able to, take part.”

Hayley, mum of Holly, says: “I have championed the Parrot trial as a parent carer. It has enormous potential to add to the lives of children like my daughter Holly.  Holly had complex health needs which meant managing a range of conditions, but especially her chest. She spent lots of time in hospital. PARROT will hopefully provide evidence to help doctors decide on how best to manage chest infections in children like Holly.”

Nawal, mum of Majd, says: ‘’This study is important to me because my son has been in and out of hospital in the past couple of months with chest infections. I'm hoping this research will help him in the future’’.

The trial is funded by both the National Institute for Health and Care Research (NIHR) Health Technology Assessment (HTA) (£2.3m) and Australia’s National Health and Medical Research Council (NHMRC) ($1.4million).

The following are collaborators on the PARROT trial:- Alder Hey Children’s NHS Foundation Trust, University of Liverpool, University of Newcastle Upon Tyne, University of Exeter, Bangor University, Queen Mary University of London, Menzies School of Health Research, Murdoch Children’s Research Institute, Guy’s and St Thomas’s NHS Foundation Trust and University College London.

Date: 11 July 2022