Participate in Research

If you have Alström Syndrome, you and your parent or guardian are invited to participate in a research study.  Little is known about the problems people have as they are growing up with Alström Syndrome.  To learn more, this study is asking people with Alström and their families to complete a questionnaire.  The questionnaire includes inquiries about the past and present life experiences of people who have Alström Syndrome and takes approximately 30-45 minutes to fill out.  Some of the questions are about things that are good in life and some are about things that are not so good.  This is described as “Quality of Life”.   If you volunteer to participate, a questionnaire will be sent to you with an envelope to mail it back.  Please contact Robin Marshall if you would like to be part of this important research.