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Our Science Data-Meister Reflects on the Big Picture

December 12, 2011 Leave a comment

Posted by Dusan Bosnjakovic, director of research information systems for Autism Speaks Autism Genetic Resource Exchange

On a day to day basis, I can get so immersed in the mechanics, data and details of what I do that I sometimes forget to step back and see the bigger picture: The tremendous value of the research information systems that Autism Speaks has created within its Autism Genetic Resource Exchange (AGRE).

I am feeling particularly sensitive to this “big picture” with this week’s announcement of the historic addition of AGRE information to the National Database for Autism Research (NDAR), which is supported and maintained by the National Institutes of Health.

I’m reminded that the goal of all my work is to increase the availability and usefulness of the vital information that we collect—information that can advance the scientific understanding of autism and speed the development of better treatments.

I promise to spare you the technical details. Suffice it to say, our role is to take the anonymous information (de-identified data) we gather from our participating families and put it in an easy-to-use format that autism researchers can use to increase the power and accuracy of their scientific findings and insights.

In joining our data with NDAR’s, we are making more comprehensive data available to the broader scientific community and also linking data collected on participants within AGRE with additional data on the same participants across a variety of other research studies (all anonymous). This is adding significantly to the autism field’s body of scientific knowledge. And this is our obligation to our families: To maximize their contributions and make sure their de-identified data will always be available to qualified scientists who are working to improve the lives of those who struggle with autism.  We take pride in providing researchers with the most comprehensive and highest quality of data possible, so that they can do what they do best: science.

Special thanks go to Reinis Berzins, our AGRE data projects coordinator, whose position was made possible by the $1 million National Institutes of Health grant we received to integrate the AGRE and NDAR databases. To learn more about AGRE, please visit its website. To learn more about the AGRE-NDAR federation, please see this week’s related news item.

Read more science news and perspective on the Science Page.

The Autism Advocacy Community Finds Common Ground at a Meeting with Francis Collins

February 8, 2010 Leave a comment

By Geri Dawson, Chief Science Officer, Autism Speaks

This week, an unprecedented gathering of the autism advocacy community was held at the National Institutes of Health. Francis Collins, director of the nation’s largest agency focused on science and public health, met with members of diverse factions of the autism community to listen to their priorities and perspectives. As Collins noted early on in the meeting, the strife among the members of the autism community is “legendary,” sometimes scaring members of the scientific community who often will instead choose to study less controversial conditions. Not surprisingly, opinions expressed at the table were indeed diverse, ranging from those who believe that autism is caused by toxins in our environment and advocate that NIH’s efforts should be targeted on prevention to those who believe that autism shouldn’t even be considered a disorder and efforts should be directed instead at improving the quality of life of persons with autism spectrum disorder. Remarkably, however, finding common ground among the autism community became the theme of the meeting.

As different members of the community passionately spoke about the suffering of people with autism and their families and the urgency with which the NIH needs to respond to the autism public health crisis, it became clear that a large part of the divisiveness among the autism community is the result of the tremendous heterogeneity in the condition. Some who spoke were parents of children with autism who are nonverbal and suffer from debilitating medical conditions, such as GI problems and seizures, whereas others who spoke were persons with autism spectrum disorder themselves, who were able to eloquently describe the need for greater acceptance of persons on the autism spectrum. And while there remained significant differences of opinion regarding where NIH should direct its resources – whether on prevention, causes, more effective treatments, or services – the common sentiment emerged that our unified goal is to relieve the burden of autism in all of its forms and manifestations. Furthermore, there was a shared sense of urgency and recognition that the NIH needs to be more aggressive, coordinated, and directive in its pursuit of scientific discoveries that will have real impact on the lives of persons with autism spectrum disorder and their families.

The meeting ended with a few words of advice from the director of NIH. He suggested that the autism advocacy community will be more effective the more we find common ground. He noted that while there are real differences of opinion, we are all on the same team and we should remember to “respect the person while challenging the idea.” He urged the autism community to hold the NIH accountable. And finally, he talked about the importance of bringing together the basic scientists with people suffering from autism, noting that this personal connection made a difference in his own career and can be highly motivating for scientists, many of whom are trying to make a real difference in the world.

I personally left the meeting feeling more hopeful that the autism community can indeed work more respectfully and productively together by finding common ground. I believe that a unified voice will be critical for holding NIH accountable. Because of the scale of the public health crisis we face, we urgently need more scientific resources devoted to our cause. Together, we can make it happen.

Geraldine Dawson became Autism Speaks’ first chief science officer in January of 2008. In this role, Dawson serves as the scientific leader of Autism Speaks, working with the scientific community, stakeholders, and science staff, to shape, expand, and communicate the foundation’s scientific vision and strategy. Dawson is also Research Professor of Psychiatry at the University of North Carolina at Chapel Hill.

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