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