Participating families will be asked to complete 2 questionnaires over the phone or by mail and measure their teen’s height (instructions below). Most families will also be asked to give consent to share some of their information from their previous participation in SEED with two national databases: NDAR and dbGaP. Details about those databases are below.
Instructions for Measuring your Child’s Height
Use the tape measure and form we send you to measure and record the height. Have child remove his/her shoes. Have this child back up to a wall with the back of the head, shoulder blades, buttocks, and heels touching the wall. Lay a hard-backed book or other flat item on top of this child’s head, against the wall, and level with the floor. Mark the wall under the book and then use the tape measure to measure from the floor to the mark. Please tell us the height to the nearest quarter inch.
Explanation of NDAR and dbGaP
What is National Database for Autism Research (NDAR)?
NDAR is a database that allows researchers studying autism to share research information with each other. With an organized way to put data together from different studies, researchers hope to learn new and important things about autism more quickly than they could without NDAR. If you would like more information about NDAR, you can go to their website at http://ndar.nih.gov.
What is Database for Genotypes and Phenotypes (dbGaP)?
The NIH dbGaP database has genetic data from many studies. Scientific researchers who want to use these data must apply to NIH for permission to use these data and access the data in a secure way. If you would like more information about dbGaP, you can go to their website at http://www.ncbi.nlm.nih.gov/gap.