Please see below information I have received about a research study being conducted in California. The researchers are looking for individuals between the ages of 5 - 89 as well as parents whose children are between the ages of 5 - 17. We have chosen to participate in this study. Please contact the researches directly with any questions at galactosemiaresearch@gmail.com.
"...Researchers from the Palo Alto University are conducting a study to learn about the impact of having Classical Galactosemia. We propose to extend current work, with the goal of gathering more comprehensive information from as many affected people as possible regarding health-related quality of life, cognitive and executive functioning, and behavior of people with Galactosemia.
We are requesting participation from persons aged 5-89, as well as participation from parents of 5-17 year olds. Wendy Packman, JD, PhD, Sabrina Vierling, B.S., and Susan Gehrig, B.A. at Palo Alto University, are conducting this study.
If you choose to participate, you will be asked to meet with an examiner for assessments and to complete questionnaires about how you or your child are living in the presence of a chronic illness. Participation in this study will take approximately one and a half hours for child, adolescent and adult patients, and only 45 minutes for parents of child/adolescent patients. If you are interested in participating in this study, please email Galactosemiaresearch@gmail.com. We will be happy to answer any questions you may have..."
