For Amy Vatner and her three young boys, participating in clinical trials at Yale has meant becoming part of a community. “My kids are now turning nine, seven, and three and a half,” Vatner says, “and they have been involved in studies at Yale for their entire lives.”
Vatner’s children first enrolled in the Autism Centers of Excellence study, and then the Yale Baby Sibling Project, in the Yale Early Cognition Lab at the Yale Child Study Center. “The goals of these studies is to aid in the development of new and earlier methods to identify Autism Spectrum Disorder and other delays, along with finding new methods for treatment,” says Dr. Katarzyna Chawarska, principal investigator of the studies and director of the Yale Early Cognition Lab. In these studies, children receive comprehensive assessments of their cognitive, verbal, and social development, along with eye-tracking experimental procedures. Upon participation in these trials, families receive clinical feedback and written summaries of the findings, at no cost.
Children who are enrolled in these studies return to Yale several times over a period of a few years, so that researchers can track their development as they grow, as well as gather data. In addition to moving the research forward, “our group has had the benefit of knowing many children and their families as they grow from infancy to childhood,” says Amy Margolis, program manager at the lab. “That is one reason, we believe, that families like the Vatners remain dedicated to research.”
For the boys, the studies mean mainly a chance to play with toys while they interact with staff, or watch videos, and Vatner says they look forward to their trips to Yale. For Vatner, she has enjoyed the insight the trials have given her into her children. “It has been great to see people getting to know your kids, noticing how they have grown, or have gotten better at something, or have become less shy.” The experience is similar, she says, to “what might have been the type of interaction you would have had with a family pediatrician years ago. I don’t think people have that these days. I felt this is a way to replace that feeling.”
Since their time at the Yale Child Study Center, Vatner and her boys have participated in other clinical trials at Yale, including a trial at the Haskins Lab, where two of her sons underwent an MRI, and received the added bonus of t-shirts with their brain imagery proudly displayed on them. “They were really excited to understand and see what was going on in their brains,” Vatner says.
Clinical trials are a family affair for Vatner; her husband is a physician researcher at Yale, and she herself grew up in the research community in Cambridge, Massachusetts. Her mother entered Vatner and her brother into several clinical trials at M.I.T. when they were children, including a well-known study that investigated vision in children from birth through age twenty-five. “I have perfect vision,” Vatner laughs, “I wonder if it has anything to do with the study.”
For Vatner’s mother when she was young, and now for Vatner herself as a mother, the main drive to participate is a belief in the value of science, and the commitment to contributing to its progress. Now, her children “understand that science is important,” she says. “Looking at how their brain functions is important. They have enjoyed it. It has given them a sense of importance in the world.”
Vatner hopes her family continues to visit Yale to participate in research as the children grow up. “You can make a very large commitment, or a very small one,” she says. Through their participation in clinical trials, “they are contributing to something that is larger than them.”