In times of political and economic uncertainty, cohesion is crucial, as highlighted in the BIA’s recent ‘Now More Than Ever’ position paper. In this context, the UK’s leading autism research charity, Autistica, is launching a ground-breaking Autism Research Network this September.

Autistica’s Autism Research Network (ARN) will link leading universities for autism research to individual members such as autism researchers, families, autistic adults and doctors.

By driving collaboration and increasing communication between world-leading autism experts, the ARN will maximise research efficiency, accelerate innovation and drive a step-change in autism science. We have the opportunity to make the UK globally attractive to industry, biotech and devices companies wanting to develop new products to improve the lives of autistic people.

Vision

The autistic population is one of the most disadvantaged groups in society. Autistic people are at increased risk of premature death from virtually every cause and many are highly medicated and face unique healthcare challenges. Yet very few trials of any kind include autistic people.

The UK is unique in its position as a world leader in autism research with an NHS open to all. Yet barriers remain which means too little progress is being made at too slow a pace. The ARN is an unprecedented opportunity to build momentum behind autism research.

What will the network do?

Network activity  What this will achieve
1) Bringing experts together

The UK’s first annual scientific conference on autism.

Scientific summits on the top priorities of the autism community, including global science leaders.

Regular meetings of all autism research funders.

· Develop a national autism research strategy.

· Increase collaboration and communication between autism researchers.

· Focus all research funders on key priorities.

· Generate innovative ideas in strategic areas of need.

2) Working and sharing together

Grants for projects which demonstrate genuine collaboration between institutions and/or between academia and the autism community.

Shared infrastructure such as tools, cohorts and datasets across Centres.

· Coordinate research initiatives and minimise duplication of effort.

· Pair researchers with different skillsets, bridging skills gaps.

· Increase the quality and quantity of research proposals.

· Maximise research efficiency.

 

3) Involving the community 

A system for the autism community to have their say in autism research. 

Support for researchers and Centres to hold local science engagement events for families, such as talks.

Campaigns for greater government investment.

· Ensure what gets funded is what matters most to people affected by autism.

· Increase dialogue between researchers and the community, so families understand new scientific discoveries and the importance of research.

· Raise the profile of autism research at a national level through families and researchers.

 

4)  Growing future leaders 

Investing in the future of autism research by training the next generation of autism research leaders, including autistic researchers.

 

·  Nurture the next generation of research leaders.

· Increase the accessibility of a career in autism research for future pioneers.

· Enable more autistic people to lead their own research studies.

5)     Supporting families 

The network’s public face will be the Gateway, an online portal for the whole community to learn more about autism research and how they can be involved.

· Offer families information on the latest trials and tools on specific topics such as mental health and wellbeing.

· Create the go-to resource for autism research, both for researchers and the autism community.

Autistica is keen that small, medium and large biotech and biopharma companies can contribute to and benefit from this research infrastructure. The network will allow you to understand the autism community’s views, needs and desires. We want to support autistic involvement in research from the beginning. We can help you recruit from this often-excluded group, harnessing assets like our world-leading child and adult cohort databases.

Research is the only way to give families the answers they desperately need. Through the Network, we can and will achieve longer, happier, healthier lives for everyone affected by autism. We invite you to join us on this transformative journey. Please contact Jon Spiers, Autistica Chief Executive, on Jon.spiers@autistica.org.uk to find out more.