Dear Families,
You are invited to take part in a Fragile X syndrome (FXS) study for racial and ethnic minority children and families by taking an online survey. The researcher, Georgianna Baker-Gay, is a Public Health doctoral student at Capella University. In partial fulfillment of the requirements for the Degree Doctor of Public Health, the researcher has chosen to examine the needs of FXS racial and ethnic minority children and families.
The purpose of the study is to create a racial and ethnic minority Fragile X awareness and education program intended to improve identification and management of FXS for racial and ethnic minority children and families. An equally important purpose of the study is to create family-based intervention programs to improve overall family development and quality of life for Fragile X minority families.
For detailed information on the research project visit:
http://bakergay26.wix.com/minorityfragilexres
Qualified participants include:
Adult Criteria
- Parent or Primary caregiver
- Between 21 and 68 years of age
- Residing in the US
- Without formal education/training in the field of or related to intellectual or learning disabilities
Child Criteria
- Male racial and ethnic minority child under the age of 18 years.
- Has an in-progress or confirmed FXS diagnosis (Premutation or full mutation)
- Residing in the US
Primary Researcher: Georgianna Baker-Gay
Capella University
gbakergay@capelluniversity.edu
Toll Free: 844-331-9984
Fax: 470-239-3582
No funding has been provided for the study. The research design has been approved by Capella University’s Institutional Review Board (IRB). The IRB has been established to protect the rights and welfare of human research participants. Please contact 888-227-3552, extension 6313.