Research Study for Young Adults with Genetic Disorders

30 Aug Research Study for Young Adults with Genetic Disorders

A Survey for Young Adults ages 18-26 with Genetic Conditions

https://www.surveymonkey.com/r/socialtransition

Courtney Whitmore is a Master’s of Genetic Counseling Candidate at the University of South Carolina School of Medicine

Ms. Whitmore’s interest include Genetic Counseling for individuals with Genetic Disorders, which includes Sickle Cell Disease.

Details regarding Ms. Whitmore’s questionnaire are as follows:

Purpose: “Evaluate the healthcare provider’s role during the social development of emerging adults with genetic conditions such as achondroplasia, cystic fibrosis, sickle cell anemia, and Marfan Syndrome.”

Study Goal: “To highlight gaps in care for these individuals and what they wished was addressed by their providers in regard to their social development.”

Survey Requirements: 18-26 years of age with a diagnosis of achondroplasia, cystic fibrosis, sickle cell anemia, Marfan Syndrome, or other genetic disorder.

Survey Length: 15-20 minutes

Survey Link: https://www.surveymonkey.com/r/socialtransition

Participants have the option to be entered into a raffle for a $50.00 Amazon gift card upon completion of the survey.

Questions? Please contact Courtney Whitmore: Courtney.Whitmore@uscmed.sc.edu

THANK YOU!

-SICKLE CELL FOUNDATION, INC. STAFF