Simons Simplex Families: Welcome to IAN, Your Autism Research Home
At autism centers across North America, you shared your children's behavioral profiles, developmental histories and diagnoses. You also contributed genetic samples to create a vital resource for autism science. With the initial family-recruitment phase of the project complete, you have been invited to join the Simons Simplex Community@Interactive Autism Network (SSC@IAN) — the online home of the Simons Simplex Collection (SSC) project. Here you can learn about follow-up studies and online surveys. You'll also receive news about research advances made possible by SSC families like yours.
If you did not participate in the SSC research project, you are welcome to peruse the articles here, and, of course, SSC families are invited to check out articles in other sections.
SSC + IAN
The SSC@IAN is a partnership between the SSC project and the Interactive Autism Network (IAN) to coordinate ongoing research activities involving SSC families.
IAN is the nation’s largest online autism research project. We collect information from thousands of families affected by autism spectrum disorders across the U.S. via online questionnaires. We also match families to research studies recruiting around the country. Our mission is to accelerate autism research.
As part of the partnership, this redesigned website has special features — articles, videos, news, blogs and polls — to keep you informed.
At SSC@IAN Articles, you will find special articles to keep you informed on the latest autism research, including studies that were completed using the data you contributed.
Watch video presentations with experts on parenting, wandering and other important autism topics at SSC@IAN Webinars.
Please stop by and "meet" some of your fellow SSC families who have been profiled in the Get to Know SSC@IAN Families section. In the Get to Know Researchers section, you will meet the scientists working with the data you provided.
Researchers hope to continue learning from your experiences and input. You will find out about ongoing studies and surveys in which SSC families are participating at Research Involving SSC@IAN Families.
When your family joins SSC@IAN:
- IAN will notify you about important SSC follow-up studies. (It will be up to you whether you choose to participate in these.)
- IAN will offer SSC-specific online research surveys.
If you choose to complete IAN's online autism research questionnaires, IAN will facilitate the linking of SSC and IAN data so that researchers will have an even more powerful set of data to use when exploring autism research questions.
Through SSC@IAN, autism researchers will be able to stay in touch with you and other SSC families as children grow and situations change. There is a possibility that the study may become "longitudinal," which means it will become even more valuable because information is collected at several points in time instead of just once.
Your Research Coordinator
Jaimie Toroney, MHS, your SSC@IAN Research Coordinator, is a resource for you, and we hope you will not hesitate to contact her at 443-923-4153 or SSC@IANproject.org. She can assist with SSC@IAN registration and answer your questions.
Jaimie, who hails from Long Island, NY, has a Master’s degree in Health Science from Johns Hopkins Bloomberg School of Public Health, and a Bachelor's of Science in Human Development with a concentration in Cognitive Neuroscience from Cornell University. Early in her career, she worked as a developmental habilitation specialist and therapeutic staff support for people with intellectual disabilities, mental illness, and traumatic brain injury.
Before joining IAN in 2014, she worked as a data research project manager at the American Urological Association. She also has been senior research program coordinator at Johns Hopkins Bloomberg School of Public Health, Department of Mental Health, and has worked on Alzheimer’s disease research.
“I am excited for the opportunity to blend my research and clinical background and apply it towards this incredibly worthy project," she said. "In this technology age, internet-based research makes participation much more convenient and feasible. And participants are a vital aspect in facilitating growth and learning, leading to better outcomes and understanding.”