University of Washington
If your child has received an ADNP diagnosis, you are also eligible to participate in the TIGER STUDY at the University of Washington. They are doing research on genetic caused syndromic autism gene mutations such as ADNP. In a recent publication the lead investigator of the study Dr. Raphe Bernier stated that "ADNP is edging its way up the research agenda" and that is because more and more ADNP families are participating.
The TIGER Study conducts a comprehensive assessment of individuals with genetic events associated with ASD, ID, and/or DD in order to better describe how different genetic events impact behavior in children and adults.
Participation includes a visit to the University of Washington in Seattle during which we will conduct a clinical assessment, neurocognitive assessment, EEG, 2 dimension and 3 dimension photos, language testing, medical examination, a blood draw, an optional skin biopsy, and collect a detailed developmental history.
Expenses related to the study visit (such as airfare and lodging) will be covered by the study and subjects will be reimbursed $100 for their participation.
Please contact them for more current information at THE TIGER STUDY.