Posted by Amy Daniels, PhD, Autism Speaks assistant director for public health research.
Last month, at Ireland’s second National Autism Conference, in Galway, I met parents, teachers, clinicians and self-advocates gathered to learn more about how they could improve the lives of individuals with autism in their communities.
As part of its Global Autism Public Health initiative, Autism Speaks has co-sponsored Ireland’s first two national conferences. This year, as last, the first goal was to provide the audience with an update on the latest autism research.
This year’s conference had an added goal: to gather input from self-advocates, parents and providers about how Ireland can build a national autism registry.
Building a national health registry
A health registry is a system for gathering information – either directly from individuals or indirectly through researchers and clinicians – about a health condition or range of conditions.
Health registries serve many purposes. They include monitoring disease trends and tracking health service use. Registries help improve the delivery of public health services and guide policy decisions. In addition, researchers can tap registries to locate and invite individuals and families to participate in clinical trials of new treatments.
For those affected by autism, a registry can mean much more. It can empower and give a voice to families affected by associated health issues that, not long ago, were receiving little attention or funding. Registries can be particularly important to shine a spotlight on rare conditions – such as some of the genetic syndromes associated with autism.
I’ve also seen what can happen when families help build a health registry. The process can build a community of individuals who believe in the power of information in advancing science and improving the lives of their loved ones.
I came to understand how an autism registry can empower families when I worked with the Interactive Autism Network (IAN) – a national autism registry conceived by parents. As an IAN staff member, I helped collect information from families affected by autism. We also asked families if they wanted researchers to contact them with invitations to participate in autism studies.
Family participation in the IAN registry enables families to help guide research. For example, family concern about bullying led to the development of an IAN survey that allowed us to better understand how children and adolescents with autism experienced bullying in their everyday lives. The same kind of parent input led to surveys on wandering, depression and a number of other important research topics.
Handing families “a microphone”
At last month’s conference in Galway, Megan O’Boyle, registry director for the Phelan-McDermott Syndrome Foundation, helped Irish self-advocates and families understand a registry’s power.
“You’re being handed a microphone,” she said. “You’re being given an opportunity to say, ‘this is what our problem is and why we need help.’” Research isn’t just about statistics or lab experiments, she continued. “It can be about collecting data on function and quality of life.… Your answers can empower you to change the system.”
Understandably, families and individuals also wanted to know about how their privacy would be protected. Most registries ensure this by removing personal identifiers from the information they contain. In other words, the vital information is collected, but we remove any information that can be traced back to one individual.
Overall, the response to creating Ireland’s first National Autism Registry was enthusiastic!
Self-advocates speak out
Some of the strongest advocates, I noticed, were young adults with autism. They included panelist Jamie Reilly, who is about to enter a doctoral program in stem cell research at the National University of Ireland.
While taking questions from the audience about the registry, Jamie described how an Irish Autism Registry would give young adults with autism a voice. “We are also making sure that the database is accessible to everyone on the spectrum,” he said.
Jamie also spoke eloquently to parents about not underestimating what their children can achieve. “Never set a limit on your children,” he said. “They could surprise you!"
The conversation about shaping the Irish Autism Registry is just getting started. Certainly, people will differ in how they would prioritize the type of information collected – be it health information, education records, associated medical conditions, etc. Yet I know that their goal is the same – to accelerate autism research in Ireland and develop positive and sustainable solutions for families.
I’m hopeful that, with family support and leadership, this registry will capture the voices of this vibrant community. I also foresee Ireland’s newest health registry leading to important discoveries, improved services and better lives for all individuals affected by autism in Ireland – and around the world.
Learn more about Autism Speaks Global Autism Public Health initiative here.
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