Creating the Digital Melting Pot: Lessons from a Web-Based National Autism Registry and Research Project

Background:

Autism spectrum disorder (ASD) studies are often limited to those living near research centers (usually located in larger metropolitan areas) and who are available during the work day. Web-based research studies offer an opportunity to expand access to research initiatives. According to the Pew Internet & American Life Project Networked Families (2008) report, 94% of married-with-children and 87% of single-parent families have home internet access. The Public Libraries and the Internet 2008 report (ALA) notes that 98.9% of public library branches (including 100% “rural, high poverty”) offer public Internet access.  Also, internet access is frequently available in the workplace.

Objectives:  

To compare participation of families of children with ASD (age <18) enrolled in a web-based national autism registry (Interactive Autism Network; IAN) across gender, ethnicity, race, prior research participation, and the urban-rural continuum.

Methods:  

8606 parents of children with ASD provided demographic, medical, and educational data on themselves and their 8767 affected children (82.3% male). Completion rates of parent surveys were compared by gender, ethnicity (Hispanic-to-non-Hispanic), race, and urbanicity. Affected child participation by ethnicity and race was compared to NSCH 2003 data. Parental participation by urbanicity was analyzed using the 2006 NCHS Urban-Rural Classification Scheme (NCHSUR).

Results:  

Mothers (88.4% of participating parents) were more likely to complete the parent questionnaire than fathers (86.4% to 83.0%, p=.004). 5.7% of parents and 7.7% of affected children (NSCH 2003 CI95%= 6.1%,11.2%) were Hispanic. Hispanic parents were less likely to complete the parent questionnaire than non-Hispanic (82.8% to 86.2%, p=.03) and affected Hispanic children were less likely to have a completed affected child questionnaire (58.8% to 66.0%, p<.001); this is likely due to language issues. 9.6% of parents and 13.6% of affected children (NSCH 2003 CI95%=13.6%,20.6%) were non-white and/or multiracial. Non-white/multiracial parents were less likely to complete the parent questionnaire than whites (80.0% to 86.7%, p<.001) and affected non-white/multiracial children were less likely to have a completed affected child questionnaire (56.4% to 66.9%, p<.001).  The average participation rate (per million population count) across the six NCHSUR categories was 28.1. Smaller metro and micropolitan areas had participation rates comparable to that figure; however, the “large metro fridge” area had a much higher participation rate (47.5) and the “large central metro” and “non-core” (i.e., rural) areas had much lower participate rates (<20). There was no difference between the completion rates over NCHSUR categories except for “small metro”, which had a higher completion rate (89.6% to 85.6%, p=.001). Of those affected children participating in IAN, only 13.7% had ever participated in a prior research study. There was no difference in prior research participation based on ethnicity, but fewer non-white/multiracial compared to white affected children had participated in a prior study  (8.2%  to 14.2%, p<.001) and fewer affected children living in small metro/micropolitan/rural area compared to large/medium metro areas (9.7% to 15.0%, p<.001).

Conclusions:

The internet has brought research opportunities to many families with ASD, most for the first time; however, societal issues (notably the absence and lower active participation of fathers) must also be addressed.