Research & Fellowships

The Castang Foundation funds research on cerebral palsy and other neurological and neurodevelopmental conditions that cause disability. This includes basic science research to help understand the causes of disability, and research that focuses on the effectiveness of interventions and health services to improve quality of life.

Current Research and Fellowships

The Castang Foundation is supporting the development of future neurodisability research leaders. As part of our plans, The Castang Foundation is pleased to be working in partnership with the National Institute for Health Research (NIHR) Academy to co-fund an NIHR-Castang Foundation Advanced Fellowship that was awarded to Dr Alex Hendry, University of Oxford: Alexandra Hendry — Department of Experimental Psychology (ox.ac.uk). You can read about Dr Hendry’s Fellowship research at: START project – Supporting Toddlers with a family connection to autism or ADHD to develop strong Attention, Regulation and Thinking skills.

In 2023 the BACD Strategic Research Group (SRG) partnered with The Castang Foundation to create a strategic Neurodisability Research Programme. £225,000 was awarded over 5 years (£45k annually) for a BACD-Castang research programme.

To support the programme, BACD confirmed it is contributing £30,000 research funding taking the total available to £255,000 over 5 years.
The aim of the 5 year research programme is to increase neurodisability research capacity, enhance collaboration and opportunities for interdisciplinary research, and major funding applications and awards. The programme will deliver this through the following workpackages:

  1. A continuation of the BACD-Castang Fellowship programme, allowing training of at least 20 new Fellows; and 10 research leaders.
  2. The creation of a strategic network of UK neurodisability multidisciplinary researchers. The network will create and deliver a 5-year strategic research plan that will support: enhanced collaboration and joint funding applications; research priority setting; and other key activities such as involvement of basic scientists, neurologists, social care and education professionals in childhood disability research. The network leadership team will design and deliver a biannual research conference (self-funded).
  3. Building on strategic network activity, face-to-face research workshops will address key areas of opportunity in childhood neurodisability research. The output of each workshop will be at least one major funding application within 12 months
  4. Finally, two research awards for £30k will be made between 2024-28 based on priorities agreed by the strategic network – these will only be awarded to those who bring matched cash funding through NHS Trust Charitable funds, or NHS Trust Research Capability Funding, and who commit to making a major research application to the NIHR within 12 months.

Outputs and impact

Specific impacts will be:

  1. The network and Fellows will increase research capacity, allowing identification and training of new clinical academics;
  2. To generate several million pounds of follow on research funding, leading to studies that generate evidence that improves the lives of children and young people with disability and their families

Governance and reporting

  • Annual funding is made available to BACD rather than an individual, University or NHS Trust. The BACD SRG leads the network for BACD
  • An annual report for the BACD Executive and the Castang Trustees will be made in writing
  • Progress will be reviewed against the activities above, and the goals

Outputs from the BACD Castang strategic research programme can be found in the sections below.

Recently Completed Research and Fellowships

14 further Fellows were trained in 2026 – 7 pipeline Fellowships (for candidates wanting to secure a funded PhD/MD award), and 7 Advanced Fellowships (for research-experienced candidates wanting to secure their next award).

10 Fellows were trained in 2024: BACD-Castang Fellowship Programme | British Academy of Childhood Disability.

Dr Paul Brownbill and Dr Mark Dilworth. University of Manchester.

Haemoglobin, when not encased in red blood cells, is highly toxic to the body; particularly cells which line human blood vessels. For babies, growth restricted in the womb and vulnerable to neurodisability, we have measured an increase in free haemoglobin in their cord blood and incapacity to manage it, which places them at risk. This project looks to utilise research models to replicate and characterise this pathogenic mechanism, but also to offset the haemoglobin dependant-compromise of the fetus, using therapeutic agents which are acceptable in pregnancy, can traverse the human placenta, and preferentially bind and eliminate free haemoglobin; thus, restoring normal blood flow and develop to the fetus. This research builds on that commenced by the late Dr Ian Crocker.

The British Academy of Childhood Disability (BACD) and The Castang Foundation support UK research that includes children with neurodisability and their families. BACD and The Castang Foundation worked together from 2017-2020 to fund and undertake two rounds of multidisciplinary Fellowships and workshops that aimed to build childhood neurodisability academic capacity.

19 Fellows (researchers or health professionals) received career development opportunities through the Fellowship workshops. Fellows went on to be successful with research applications (>£5million of research funding), further high profile Fellowship applications and new posts (including clinical academic posts).

BACD and The Castang Foundation worked together to fund applications to improve the evidence around what treatments and interventions are effective, or not effective for children and families. The Castang Foundation funded three research awards – details of completed research can be found below.

RAISE – Researching Allied health In Schools and Education

BACD–Castang award 2018. Lead investigator: Dr Jennifer McAnuff, Newcastle University.

Allied health professionals (occupational therapists, physiotherapists, and speech and language therapists) work in schools supporting children and young people affected by neurodisability. However, the content, impact, and cost-effectiveness of their school-based interventions are not well-understood. The clinical research team systematically mapped the available evidence and identified that allied health school-based interventions target highly diverse health-related outcomes and wider determinants of children and young people’s health, including educational participation (e.g. literacy) and characteristics of the school environment (e.g. educators’ knowledge and skills). The team produced an interactive evidence map that can be used to help stakeholders prioritise the interventions most in need of further evaluation and implementation research, including tiered models of universal, targeted, and intensive allied health support. Teachers and teaching assistants play a central role in delivering allied health interventions in schools – appropriate preparation and deployment of the education workforce should therefore be a specific priority for future international allied health research.

Promoting Social Participation to Prevent Mental Health Problems in Children and Young People with Neurodisability: An Interventions Development Study

BACD–Castang award 2017. Lead investigator: Dr Rob Brooks, Leeds Beckett University.

Children with a neurodisability risk developing mental health difficulties; enabling their social participation with friends and family can support good mental health and prevent future mental ill health. This research found that children with a neurodisability want to join social leisure groups but when they do they feel judged and unsafe. Working with young people, parents and healthcare professionals this study has specified an intervention to enable children with a neurodisability to participate in contexts such as sports and art clubs. The intervention will be delivered by club leaders trained by healthcare professionals. The findings from this study have been presented in a video developed by young people, published in a peer-reviewed journal, and reported at conferences, including an impactful presentation from a parent who took part in the study. Next, the intervention will be developed further by the research team for a future trial in the NHS.

More information can be found here: Brooks R, Lambert H, Coulthard L, Pennington L, Kolehmainen N. (2021). Social participation to support good mental health in neurodisability.

The Identification of young children at the highest risk for developing Severe Challenging Behaviour (i-RiSC): Proof of principle and appraisal of feasibility

BACD–Castang award 2016. Lead investigator: Professor Chris Oliver (University of Birmingham).

National clinical guidelines recommend preventative interventions for those at risk of behaviours that challenge (BtC). To facilitate this, it is first necessary to identify which individuals are at highest risk for BtC and to develop new, preventative intervention materials. The iRISC project developed a novel, effective and brief screening tool which assessed children’s risk of developing BtC using machine learning approaches. The iRISC screening tool was feasible to administer in the NHS and yielded prediction models with fair to good performance on key metrics, as well as the ability to predict BtC over time. A new modular psycho-education intervention called ‘Identifying and Knowing about Behaviour’ (iKNOW) was developed. iKNOW was piloted with carers and professionals, and materials were refined in line with stakeholder feedback. Together, the iRISC screening tool and iKNOW intervention provide a feasible, risk-informed service delivery model to enable proactive and preventative intervention for BtC. Since the BACD-Castang funded project, the investigators have further developed their materials and received follow-on funding for further studies. Two research papers are in preparation.

Professor Peter Sullivan (University of Oxford), Dr Morag Andrew and Professor Jeremy Parr (Newcastle University) led an innovative Randomised Controlled Trial to investigate whether nutritional intervention for neonates at risk of neurodisability led to improved neurodevelopmental outcome at 2 years of age. The trial used a supplement provided by the company Nutricia. The findings were that the supplement group had non significantly higher cognitive and language scores than the placebo supplement group. The Castang Foundation has funded follow up studies of the children from this trial and another trial involving infants with neurodisability. The research findings from the neonatal trial can be found here: https://onlinelibrary.wiley.com/doi/full/10.1111/dmcn.13914.

Professor Parr and Dr Andrew used the evidence from the Castang Foundation funded neonatal trial in a successful application to undertake a fully powered RCT to investigate the clinical and cost effectiveness of nutritional supplementation for infants born preterm or with reduced oxygen around birth. The DOLFIN trial is funded by NIHR and details can be found at: DOLFIN | NPEU.

The Castang Foundation funded part of this groundbreaking trial led by Professor Jeremy Parr at Newcastle University, together with colleagues from across the UK. The Randomised Controlled Trial showed that the two most commonly medications used to treat drooling in children with neurodisability (hyoscine and glycopyrronium) are equally effective. However, glycopyrronium is associated with fewer side effects and is better tolerated by children and parents. The open access research paper with the results can be found here: Drooling Reduction Intervention randomised trial (DRI): comparing the efficacy and acceptability of hyoscine patches and glycopyrronium liquid on drooling in children with neurodisability | Archives of Disease in Childhood.

Following publication the results of the study influenced NICE guidance for treatment of children and young people with cerebral palsy, and AACPDM international guidance about treatment pathways.

A UK national survey showed that the DRI trial results had led to UK paediatricians changing their prescribing practice – reducing the chances of children having side effects from treatment. Companies then used the results of the DRI trial to licence new medications to treat drooling – these medications are increasingly prescribed in the UK and worldwide. As part of the continuing drive to improve the treatment of children’s drooling, Professor Jeremy Parr leads an international expert steering group who have created new evidence based educational materials about drooling treatment. Those materials can be found here: https://campsite.bio/issg.resources.

A request for funding was received from the Autism Research Trust (ART). A small grant was awarded to enable the group to study one of the five candidate genes. The ultimate aim of this project is to find a gene that is directly associated with autistic spectrum disorders. The likely outcome of such a study on its own would be to provide the pilot evidence that will subsequently provide the case for the Medical Research Council to fund a larger scale project investigating this area.

Leads: Professor John Osborne and Professor Finbar O’Callaghan (University of Bath)

Infantile spasms comprise a severe seizure disorder have a high morbidity and are difficult to treat. This study aimed to compare the effects of Vigabactrin with those of prednisolone and tetracosactide in the treatment of spasms.

Two significant articles were published in 2012:

  • O’Callaghan FJK, Lux AL, Darke K, Edwards SW, Hancock E, Johnson,AL, Kennedy CR, Newton RW, Verity CM, Osborne JP. ‘The effect of lead-time to treatment and age of onset on developmental outcomes in infantile spasms: evidence from the United Kingdom Infantile Spasms Study (UKISS’, Epilepsia 52(7)@ 1359-64;
  • Osborne, JP, Lux AL, Edwards SW, Hancock E, Johnson AL, Kennedy CR, Newton RW, Verity CM, O’Callaghan FJK. ‘The underlying etiology of infantile spasms (West Syndrome): Information from the United Kingdom Infantile Spasms Study (UKISS) on contemporary causes and their classification’. Epilepsia 51(10): 2168-74.

Listening effort in young adults and children with normal hearing and hearing loss. The funding is being used to fund a PhD student.

This study carried out over 6 years from 1998-2004 involved 8 centres across Europe (Dublin, Edinburgh,Helsinki,Lisbon,London (2 centres), Stockholm and Tubingen. The study was directed by Dr Martin Bax and aimed to identify potential causes of cerebral palsy. A paper was published in JAMA Oct 4 2006, Vol.296, No 13’ entitled ‘Clinical and MRI correlates of cerebral palsy: The European Cerebral Palsy Study: M Bax, C Tydeman, O. Flodmark.

About 50% of children with autistic spectrum disorder (ASD) develop epilepsy. Some may have this from the start of the condition but in many children it develops later and may not occur until adolescence. Researchers examined two groups of children – 1 group with ASD and another group with ASD and epilepsy. The notion was that children without epilepsy might have a different form of autism to those with both ASD and epilepsy.

A paper was published in Acta Paediatrica 2009, 98, pp675-682 ‘Autistic Spectrum Disorders in Children with and without epilepsy: impact on social functioning and communication. J. Turk, M.Bax, C.Williams, P.Amin, M. Eriksson, C.Gillberg.

Donate to the Castang Foundation

Childhood neurodisability is very common – most people know at least one family where a child has a disability due to a neurological condition.

The Castang Foundation funds one or two new research projects each year. However, we would like to increase the amount of research we fund. Your donation to The Castang Foundation could part or completely fund research that could change children’s lives.

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