The study is comprised of multiple phases. The specific research plan for individual participants and families will depend on the family history and genetic data we collect.
Informed Consent & Enrollment
Once the research team has determined that the study is appropriate for an individual or family, they must provide proper consent to be in the research study. This can be done in person, at the University of Pennsylvania (Penn), or over the phone, for those who are unable to come to Penn.
Written informed consent must be obtained for adult participants and parental permission is required for participants under the age of 18 years old. Child assent will be obtained whenever possible and appropriate. Participants who consent to participation remotely (over the phone), are required to return the signed consent forms by mail.
Upon enrollment, participants will be assigned a unique study ID. Samples and information collected during the study will be identified by this label, and not by name or personal identifiable information.
Blood Draw & Genetic Testing
After proper informed consent is obtained, a blood sample will be collected from participants. The sample will be used to prepare DNA (genetic material), which enable us to study the genetic information that may be responsible for autism-related traits and symptoms.
Questionnaires
Participants will complete a series of online surveys and questionnaires through a secure web-based program called Progeny. To access the questionnaires online, participants must create a username and password.
These questionnaires will help us learn more about family history, developmental history, social-communication skills and lifestyle habits.
We hope that this online option will help minimize any travel-related costs and burdens. Participants may also request to complete the paper versions of the questionnaires and return them by mail.
Activity & Sleep Tracking
Actigraphs are wrist monitors that measure your activity levels throughout the day and night. The monitor is about the size of a watch and fits on your inactive wrist with a strap. All normal daily activities can be completed while wearing the actigraph.
