What to Expect
The ASPE 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
When an adult (age 18 years and over) is interested in participating in the ASPE Study, they can click on a link which will take them to the ASPE study’s secure, online system. Through that online system, the person will be invited to answer a series of questions which will determine the person’s eligibility for the study. If the individual is determined to be eligible to participate, they will then be asked to provide their preferred contact information, read the consent form, then complete a quiz to ensure that they understand the consent form, all via the online system, and fill out screening questions to determine eligibility for the study. If the consent form quiz is completed correctly and the person is determined to be eligible for the study, the individual will then be able to sign the consent form via the online system.
For individuals under the age of 18 years, consent of a parent or legal guardian is required in order for the child to be able to participate. Child assent (agreement to participate) will be obtained whenever possible and appropriate. The parent and, if possible, their child will be asked to participate in a phone call with a study Research Coordinator prior to signing the consent form. This call will allow the Coordinator to make sure the parent fully understands the consent form and that any questions have been answered. During or following this call, consent will be provided by parent or legal guardian by signing the consent form via the online system.
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.
Saliva Collection & Genetic Testing
After proper informed consent is obtained, a saliva kit will be mailed to participants for sample collection.
Questionnaires
Participants will complete a series of online surveys and questionnaires about behavior and psychological traits through a secure web-based management platform called REDCap. REDCap is an institutionally-secured and password-protected server.
These questionnaires will help us learn more about family history, developmental history, social-communication skills and lifestyle habits.
We hope this online option will help minimize any travel-related costs and burdens and increase participation.
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.