The William Little Foundation plays two important roles for the sector:
Bringing the Cerebral Palsy Community Together
Throughout our history we have been able to bring together some of the leading figures in cerebral palsy research to share and review the latest insights uncovered by scientists around the world. As well as bringing elements of the global research community together, our workshops and conferences have also thrown out challenges to them in terms of new directions for research.
As our own review has established, there is alarmingly little funding dedicated in the UK to CP research, particularly when set against its cost to the nation. It’s vital that the funds that are made available are applied to the research that will yield the greatest impact on the fight against CP in the shortest space of time, this means our work in helping the research world understand the benefits of focusing on this is equally vital.
Research Priority Setting
We are setting-up a Research Priority Setting Partnership with the James Lind Alliance that will bring together people affected by cerebral palsy, medical practitioners and researchers to share the insights from our research review and help define where the greatest opportunities and benefits are likely to come for research in the UK. We plan to share the findings of this process at a conference for a wider community of researchers, charities and funders.
Cerebral Palsy Coalition
We have also founded the Cerebral Palsy Coalition, an alliance of [nearly 60] charities and other organisations. The aims of the Coalition are:
This is the first time the CP sector has been brought together to provide a common voice for those affected by CP in the UK and those working with and for all those in the UK. Together we will work to raise public awareness of CP and its impact on people’s lives and seek to improve the services available to those affected by it.
Both these activities will have a significant impact on the lives of people affected by CP today but will also play a vital role in reducing the incidence of CP in years to come. However, these initiatives can only happen with your support. Please consider supporting The William Little Foundation Community Fund.
Our Research into Cerebral Palsy
Understanding of the causes of cerebral palsy has become clearer as a result of The William Little Foundation’s support of initiatives like the European Cerebral Palsy Study (see Our History / Achievements).
Historically, despite its immense financial cost to the nation of at least £1.6 billion annually and despite the leaps forward in our understanding of the condition, the UK invests only c. £4.8 million in CP-related research, with less than 1% of this going towards prevention research. Our report on global research concludes that this figure must at least double if the UK is to continue to make a material impact on CP. Funding on prevention research needs to reach c. £2 million annually.
Our recent review of research on CP around the world (see What’s Happening in CP Research Around the World?) identified 4 areas where, given enough investment, research can make a global impact on understanding the causes of CP, enabling us to prevent it.
Better Data on CP Prevalence and Risk Factors
We currently have an incomplete picture of how many people in the UK are affected by CP – record-keeping and diagnosis have been historically inconsistent and incomplete. This is a global problem, but one that is increasingly being addressed in countries like Australia, Canada, the USA and some countries in Europe, with the establishment of national CP patient registers: disease-specific, standardised collections of information about patients. They include information such as a patient’s medical history, disease diagnosis, NHS number and Patient-Reported Outcome Measures data. This collected data can help produce an accurate picture of CP, linking current treatment practices to clinical outcomes.
Help us establish a UK CP Register which would make a significant contribution to research and also provide an evidence base to deliver better care and services to those affected by CP.
Collaborative Studies Looking at Maternal Nutrition and the Risk of CP
There is an urgent need for large-scale, multi-institution studies to build on the insights of Prof Michael Crawford and Prof Mark Johnson’s work on maternal nutrition. In 2014 the Chief Medical Officer recommended a review to identify pregnancy research needs and priorities in the UK and how these compare to the current funding landscape. This has recently been published by the UK Clinical Research Collaboration in partnership with RAND Europe and made clear that research on improving maternal nutrition and understanding the impact of nutrition on pregnancy and its effect on the baby was considered a high priority for both healthcare professionals and researchers.
This is a crucial area of research if we are to be able to prevent CP. See here for more information about Prof Michael Crawford and Prof Mark Thomson’s continuing work on maternal nutrition.
Building Evidence of CP’s Origins in Early Pregnancy
Dr Martin Bax’s European Cerebral Palsy Study provided a new basis for our understanding of CP. However, we need a much better understanding of how the normal brain develops to better understand what goes wrong in CP. We particularly need a better understanding of the brain systems that control motor function i.e. muscles, movement and coordination, which can help to link injuries in specific areas of the brain to specific motor problems. It can also help to define time points when the baby’s brain is more susceptible to injury, identifying the origins of CP and informing periods when intervention may be of benefit. The timing of the brain lesions that are, in most cases, the cause of CP is still not fully understood and, although many studies show that CP has its origins before birth, it is crucial to identify specific time periods during pregnancy after which damage to the brain might become irreversible. This will be crucial for all preventive interventions.
Testing the Relationship Between Gestational Diabetes and CP
Some studies have suggested an increased risk of CP with gestational diabetes in a specific population. However, these results have been over-interpreted by some organisations that have since made strong claims linking gestational diabetes in pregnancy to an increased risk of CP. We need to mount new scientific studies, using robust longitudinal (where data is gathered from the same subjects over a period of time) or case-control methodology, to test this theory. These insights will be further refined as we complete our research Priority Setting Partnership currently being developed with the James Lind Alliance.
As the only prevention-focused charity in the CP sector, we can only do this with your help. We urgently need more support to help researchers in their search for the means to prevent CP. If you would like to be part of the cutting-edge of CP research, please consider donating to the William Little Foundation Research Fund.