Engaging the Next Generation in ASD Research – Experiences of the Ssc@IAN Family Registry

Saturday, May 14, 2016: 11:30 AM-1:30 PM
Hall A (Baltimore Convention Center)
J. S. Toroney1, J. K. Law2, A. R. Marvin3, C. White4, E. Brooks4, E. M. Arthur5, W. K. Chung6 and P. H. Lipkin5, (1)Medical Informatics, Interactive Autism Network, Baltimore, MD, (2)Interactive Autism Network, Baltimore, MD, (3)Department of Medical Informatics, Kennedy Krieger Institute, Baltimore, MD, (4)Simons Foundation, New York, NY, (5)Kennedy Krieger Institute, Baltimore, MD, (6)SFARI, Simons Foundation, New York, NY

ASD patient registries engage families in new research initiatives and facilitate longitudinal data collection. Child registrants who transition into adulthood provide a unique opportunity to enroll the next generation in ASD research. Established in 2011, the SSC@IAN represents over 1400 families who participated in the original Simons Simplex Collection study. In 2015, efforts were undertaken to engage and consent nearly 600 childhood participants from this cohort who had reached 18 years.


To determine the ability to engage and consent young adults, with and without ASD, who have been previously enrolled for research as children and require re-consent upon reaching 18 years.


Parents of over-age-18 children were invited to complete an online form designating their child’s appropriate legal status – legally independent vs. dependent. If independent, parents were given the option to invite the over-18 child to continue his/her participation in the registry. Over-age-18 participants, with and without ASD, were notified by email about the SSC@IAN and given the option to participate. Electronic consent was obtained. New participants were asked to provide current sociodemographic and medical information.


Invitations were sent to parents of 567 children who had reached 18 years: 304 probands with ASD (53.6%) and 263 unaffected siblings (46.4%). Parents were more likely to respond for their children with ASD than their unaffected children [Proband: n=92 (30.3%); Sibling: n=47 (17.9%); p<.001; Fischer Exact Test (FET)]. Of the 92 probands, 43 (46.7%) were reported to be independent adults, 47 (51.2%) were dependent adults and 2 (2.2%) were reported as “other.” One unaffected sibling was reported as “other” and the remaining 46 (97.9%) were reported as independent adults. There was no significant difference between the percentage of independent probands (n=37; 86.0%) and unaffected siblings (n=39; 84.8%) that parents invited to join the study as consented adults, and no significant difference between the percentage of independent probands (n=17; 45.9%) and unaffected siblings (n=23; 59.0%) who agreed to join the study as a consented adult (Figure 1).

Efforts to recruit adult probands took place with the re-engaging all registry participants. Overall, parents were less likely to engage if the proband was over age 18: 92 of 304 (30.3%) families of adult probands responded compared to 493 of 1082 (45.6%) families of child probands, χ2(1, N=1386) = 9.49; p=.002 (Yates correction).


Established ASD patient registries provide a unique opportunity to engage multi-generational cohorts in research. Enrolled parents are able to be engaged to facilitate continued participation of their young adult children – an often difficult population to recruit. Parents were more likely to provide information about their adult son/daughter with ASD compared to his/her adult sibling; however there were no significant differences in obtaining consent from independent young adults with and without ASD. Overall, families with adult children were less likely to respond than families with children under 18. Specific challenges include re-engaging parents of over-age-18 participants, identifying appropriate legal status for adults with ASD, and communicating the potential role of unaffected adult siblings in future ASD research.