Workshops

The Castang Foundation has supported research workshops since 1994. Recent workshops are listed here, with outputs/publications.

Between 2017-2026 there have been 4 Fellowship workshops leading to training of more than 40 Fellows. Fellows meet with mentors and national experts to learn new skills and develop applications. Fellows went on to be successful with research applications (more than £2.5million of research funding), further high profile Fellowship applications and new posts (including clinical academic posts). For more information see the Research and Fellowships page.

BACD Strategic Research Group members met with parents to discuss new topics for priority setting. 4 research topics were identified and work commenced in partnership with NIHR to develop these into research calls.

Early stage priorities were also identified, and they became the subject of BACD Castang Foundation research development workshops that are being carried out in 2026.

The workshop was held at RCPCH in December 2023 and led to a successful application for one of the RCPCH-NIHR Programme Development Grants: Celebrating research on children’s health and wellbeing – from the NIHR Programme Development Grant winners | RCPCH.

This award aims to increase childhood disability research capacity, and answer a key research question of our time. Information about the study can be found at: What evidence-based standardised health, education and social care offer and model of care should be provided for children with neurodisability and their families, and what would be needed to ensure a localised version can be provided efficiently at scale and individualised to reduce inequity? – NIHR Funding and Awards.

Aims

Children with neurodisability often receive services from occupational (OTs), physiotherapy (PTs) and speech and language therapists (SLTs), but the effectiveness of many therapy interventions is unknown. The BACD James Lind Alliance Priority Setting Partnership identified that evidence about therapist delivered interventions were a main research priority.

The aims of this project were to:

  • Identify which therapy interventions (designed and/or delivered by OTs, PTs and SLTs) are priorities for research evaluation.
  • Inform the National Institute for Health Research (NIHR) Health Technology Assessment (HTA) programme and other funders of the outcomes of the workshops for consideration in future research calls.

The work was funded by BACD and The Castang Foundation.

Methods

Members of the BACD Strategic Research group (SRG) searched published reports of priorities relating to childhood neurodisability, to identify any existing priorities relating to therapy interventions. Scientific Advisers at NIHR HTA, provided information on NIHR research that was planned, ongoing, or complete.

Therapists working in acute, community and education settings, providing primary to tertiary level care for children aged 0-19 years with a wide range of neurodisability diagnoses, were invited to join the priority setting. Thirty-five therapists (13 PTs, 10 OTs, 12 SLTs) took part in a survey, listing the top five therapy interventions they considered in greatest need of research for their client group. Thirty-three therapists (8 OTs, 11 PTs, 12 SLTs) took part in workshops (17 in London, 15 in Leeds). A parent of a young man with neurodisability joined the Leeds workshop to sense check and provide a family perspective on the interventions.

In the workshops, therapists worked in small groups to identify the therapy interventions most in need of research evidence for three to four fictitious children aged 0-19 years with a range of disorders, impairments, levels of participation and life circumstances. Workshops followed an iterative process. Participants in the London workshop were shown the priorities identified in the survey and considered these when prioritising interventions in their groups. Groups in the Leeds workshop considered the list of interventions, and their priority status, generated in the London workshop and added any priority interventions they felt were missing. These priorities formed a long list. The Leeds participants then voted on the top priorities from the long list to reach a shorter list and then the top five priorities.

Top five therapy interventions prioritised for research

  1. Is Intensive Interaction more effective than treatment as usual in increasing the communication performance of children with profound learning disability?*
  2. Is therapist-delivered group training for parents on communication more effective than individual parent coaching in improving the communication performance of preschool children with motor and/or intellectual disabilities?
  3. Which type of stretching programme (active vs passive vs no stretching) is most effective in improving the gait, active and passive range of movement, participation of ambulant children with cerebral palsy (GMFCS I – III) 5-11 years?*
  4. Are therapist-led targeted strengthening programmes (to be defined) more effective than community leisure/fitness programmes in increasing the strength, function, participation and gait of ambulant adolescents with cerebral palsy?*
  5. Are home programmes more effective than therapist delivered interventions or treatment as usual for children with neurodisability?

*These topics were prioritised for funding by NIHR and were the subject of open research calls. Successful applicants are currently working on NIHR funded studies as a direct impact of the BACD Castang workshop findings.

Meeting held on 19th and 20th March 2015 in Informatics Forum, University of Edinburgh.
To view the PDF for this meeting please click here. 

Castang Foundation Meeting held on 13 and 14th March 2014 in Edinburgh at the Royal College of Physicians.

This very successful meeting was run by Professor Anne O’hare and Dr Paul Eunson. The first day featured speakers on Harnessing the epidemiology of national cohorts; neonatal imagining and its relationship with neurodevelopmental outcomes; molecular genetics and outcomes; the cascading impacts of cerebral visual impairment. Second day speakers discussed topics including early intervention to optimise motor development; biochemical map of synapse development. Much discussion took place at the end of each day and links are being built between the researchers to develop grant applications and learn from each other’s work and methodologies

To view the PDF for this meeting please click here.

The Royal Society of Medicine (Chandos House) London. The meeting gathered together clinicians working in obstetrics, neonatology and paediatric neurology to exchange ideas and develop new ideas on how to collaborate in further research to protect the fetus and neonate.

To view the PDF for this meeting please click here.

The Royal College of Physicians, Edinburgh, Scotland UK: The meeting was organised by Professor Anne O’Hare There was been an exponential expansion in the understanding of genetic and neurophysiological contributions to auditory processing and also the importance that cognitive factors such as listening effort, attention, memory and social conditions can play in language development. The programme was designed to capture current progress and to speculate how this might be applied to clinical practice. Areas of further study were identified and it is hoped to hold a follow-up meeting in 2014/15.

The workshop was organised by Professor John Osborne and took place in Bath UK. Participants came from all over the world and the UK to discuss the work being done on Infantile spasms and to discuss the findings from the research into infantile spasms being carried out by Professor Osborne and his team and others.

Held in Vancouver at the Child and Family Research Institute, BC Children’s Hospital, Vancouver, Canada: The workshop was funded jointly by the Castang Foundation and the Family Research Institute, Vancouver, Canada and jointly organised with Professor James Jan. The purpose of the meeting was to promote sleep research relating to children with neurodevelopmental disorders, create a strong collaborative research network and educate other physicians and allied health professionals. Following the meeting Professor Leopold Curfs from Maastricht organised a small research group with two other participants to discuss further research. It is hoped that eventually a book may be published on the findings from the workshop.

Royal Society of Medicine, Chandos House, London. A workshop on the Placenta was held in 2003 and given the exciting advances in work on the placenta this further meeting was held to discuss recent work. As a result of the meeting a book ‘The Placenta and Neurodisability’ is in Press and will be published by The Mac Keith Press in 2013.

The birth of extremely premature infants and all the complications arising from that event presents fundamental challenges to families and the physicians who care for these babies. This workshop dealt in depth with many of the problems such as ‘what are the ethical considerations which underlie decisions? Can what Is known about long-term outcomes in general regarding morbidity be applied to the developmental potential of the individual child? Professionals and parents participated in the workshop all searching for that wisdom that can inform others who care for those who are born too soon.

The meeting held at The Novartis Foundation in London was jointly sponsored by the Castang Foundation and the Cerebral Palsy International Research Foundation in the USA. The aim was to produce consensus statements on systematic approaches to evidence based effective treatment in childhood neurodisability. A book ‘Evidence based therapy in childhood neurodisability’ was published by the Castang Foundation in 2012.

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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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