The Purdue Neurodevelopmental Family Lab at Purdue University is recruiting participants nationwide for a research study on the early development of children with Angelman syndrome. Families of children ages birth to 48 months are invited to enroll.
The longitudinal study will examine how children with AS and their families develop over time.
- Participation does not involve any travel and can occur from home at a time convenient to you!
- Families complete online forms and optional phone interviews annually for 3+ years.
- The surveys and interviews cover topics about general child development (e.g. thinking, motor, social skills), medical needs, problem behaviors, and child strengths.
- Because children develop within families, Purdue is also asking children’s mothers about their experiences as a parent.
- Each assessment takes 60-90 minutes to complete, and families are provided a $15 gift card per assessment in appreciation of their time.
To enroll, families must meet the following criteria:
- Have a child diagnosed with AS age 48 months or younger
- Family is willing to provide a copy of genetic or medical records verifying AS diagnosis
- Mother is 18 years or older and willing to complete survey and interviews
- Child is biological descendent of mother (e.g. not adopted)
Parents’ responses will help researchers better understand the unique strengths and needs of young children with AS, potentially informing stronger early interventions, treatments, and community supports. There is no direct benefit to the families or children for enrolling in the study. Risks associated with participation are minimal but may include discomfort answering personal questions during the interview and potential breeches of confidentiality. Parents have the option to decline participation in any study component they are not comfortable completing, and may discontinue participation in the study at any time. Responses are kept confidential and are not linked to the child’s or family’s name.
For more information, contact the Neurodevelopmental Family Lab at NDDFamilyLab@purdue.edu. The study coordinator, Dr. Bridgette Tonnsen, will contact families to determine eligibility and answer any questions about the project.
The Angelman Syndrome Foundation does not endorse any clinical trial or study, but provides information to the AS community for its own consideration.