National Database for Autism Research

Transcript

Announcer: Unlocking the mysteries of autism and providing new hope for the families and individuals facing its challenges are missions shared by dedicated scientists across the country and around the globe. But despite an overwhelming need for answers, this disorder has not given up its secrets easily, as illustrated by Nancy Minshew, a leading autism researcher at the University of Pittsburgh.

Nancy Minshew: Autism is so complex that there's not going to be one thing. What everyone has to realize is that our entire brain and body all started from the coding instructions in that one cell that came from the merging of the sperm and the egg. All of the instructions for every single thing at a molecular level was contained there, so that must be incredibly complex. We can figure it out, but it's going to take us time. We need samples in some areas, six, seven, 10,000 people. We will never get that at one site, and so development of networks has shown us over the past 10 years that we can pool data across sites of various kinds and have a very powerful impact.

Announcer: With the support of five Institutes and Centers at the National Institutes of Health, the National Database for Autism Research, or NDAR, was created as part of the federal response to address the needs of scientists studying autism. The goal of NDAR is to make available to scientists all of the human data now being collected, ranging from molecules to genes, to behavioral, social, and environmental interactions. The goal of NDAR is to make available to scientists all of the human autism data now being collected, ranging from molecules to genes to behavioral, social and environmental interactions. These data are being collected, not only at NIH but also at private organizations and international research efforts being conducted around the globe. Together, they will provide far more research data than could any one lab could collect on its own. Through this effort, NDAR is enabling scientists to better understand autism and thus helping accelerate scientific discovery. As Portia Iversen, co-founder of Cure Autism Now explains.

Portia Iversen: It's kind of like when you go into a pediatrician in a medical system and then you go to a specialist and another specialist, and all the records are centrally located and they can all pull them up on their computer. Another thing to consider is that the kind of scientists who might want to work on autism, but is absolutely daunted by the cost of collecting samples, of getting this type of information together. That problem becomes very diminished and it's no longer really a huge obstacle and so it also creates an opportunity and motivation and incentive for more researchers to get involved in the field of autism research.

Announcer: NDAR's goal of collecting over 90 percent of human subjects data related to one area of research is the first effort of its kind attempted on this grand of a scale. Such an effort requires the active involvement of the research community, but especially those individuals and families consenting for their information to be shared with many scientists. Ed Cook, an autism researcher at the University of Illinois at Chicago, sees how family and individual support of NDAR serves as a cornerstone for meaningful, future research.

Ed Cook: For those that volunteer-and I have found people with autism or families with people with autism tend to be extremely generous with their time in volunteering-I think people understand that this is how we are going to know more. The progress might be slow, but especially in the context of younger children, they may benefit from the research in terms of the new treatments.

Announcer: At Baltimore's Kennedy Krieger Institute, Dr. Paul Law serves as Director of the Interactive Autism Network. He is also a parent of an autistic child and sees the value and reach of NDAR.

Paul Law: As a research participant myself, I'm thrilled that NDAR exists, and that when I participate in a research project, that data is being taken to a central place and well cared for and connected with all the other projects I've participated in a way that researchers can make the most use of it and improving the quality of life for my son and my family.

Announcer: It is important for potential research participants to know that while their data may be shared through NDAR, their identities are not. Before any data are shared, all information that could be used to identify a research participant is removed. Research participants are assigned a code, a global unique identifier, or GUID, which allows researchers to access information from individuals participating in multiple studies, without knowing their identities. Qualified researchers who want to study autism can ask to see the information in NDAR, and all requests are carefully reviewed by a committee of experts in protecting scientific information. As a parent of an autistic child and a member of the NDAR team, Gretchen Navidi understands and appreciates privacy issues along with the need to pool data.

Gretchen Navidi: I think it's important to share information that could potentially help others, but I'm also very concerned about protecting my son's identity. And with the GUID I feel completely secure. It's based off of personally identifiable information, but that information never goes beyond the researchers who we're working with, so nobody else knows who we are. A single person participating in any kind of research isn't going to be able to provide enough information for researchers to answer any of the questions that they're asking. But when you start with one person, and you add another person and you keep going, you end up with a large enough group of people. In my family, it started with my son, then I participated It's really important for other family members to participate because there's so much to be learned about autism from comparing affected and non-affected individuals, especially within a family.

Announcer: If you later decide that you no longer want to share your or your child's information in NDAR, simply contact the researchers who did the study, and they will tell NDAR. NDAR can stop sharing the information from that point on, but any information that was already shared cannot be retracted. The NDAR centralized database is making a difference for families and researchers. As NDAR matures, so too will our understanding of those living with autism.

Nancy Minshew: It's important to recognize how much progress has happened in the last ten years. But then to realize we have to have patience, because it is so complex, to keep going. The answers are there and people have mobilized to look for them.

Portia Iversen: All of us, every parent would like to see some discoveries start to be made about the causes of autism. There undoubtedly will be many kinds of autism, but you know that's what we're waiting for, and by participating in something like NDAR we're making a real contribution to speeding up that happening.

Paul Law: I think the key thing that NDAR has to offer families is that their desire to contribute to autism knowledge and treatment, for not just their child but for everybody, is going to be maximized by having that data brought into one place.

Ed Cook: It's a long road, I have to say that about autism research. We have exciting moments and it's hard to predict them, but there's no question that the participation of people with autism and family members is essential to moving forward.

Announcer: To learn more about the National Database for Autism Research and how your participation is helping accelerate scientific discovery, visit the NDAR website