The University of Colorado and Children’s Hospital Colorado is conducting a research study to learn more about the guardianship experience of individuals with Fragile X Syndrome. We are currently looking for survey participants.
Parents, siblings, current guardians, future guardians, social service workers, and healthcare providers of individuals with Fragile X Syndrome.
As a participant you will be asked participate in a 30 to 60 minute survey answering questions tailored to your situation regarding your experience with the guardianship process. You will be asked to sign a consent and your identity will remain anonymous.
We at the University of Colorado and Children’s Hospital Colorado hope that this research study will lead to advances in our understanding of the guardianship process for future guardians of individuals with Fragile X Syndrome. We also hope that this research will provide a more structured and comprehensive presentation of information for families and professionals to help promote better transition planning for patients and their guardians. It is our hope that the results of this study will be used to guide counseling around guardianship for current and future guardians, including siblings, of individuals with Fragile X syndrome.
This survey is no longer open, thanks to the many families who participated (thank you!). If you have any further questions, please contact Madison LaFleur at 303-724-5787 or Madison.LaFleur@ucdenver.edu.