Supporting Families. Saving Lives.
FATHERS of children with Long QT Syndrome are needed to share their experiences. To participate in this research study, fathers must be over the age of 18 with at least one child who has been diagnosed with LQTS syndrome for at least 1 year. Participation involves a 60-90 minute interview in person or via telephone or video call. The purpose of this study is to examine how families are affected by LQTS by describing the perspectives of fathers. You will be asked several questions about the challenges that you have encountered as a parent of a child with LQTS and how you have coped with these challenges. You will also be asked to complete a brief demographic questionnaire. Participants will receive two movie tickets when the interview is completed. The principal investigator of this study is Stephanie Felgoise, Ph.D., ABPP at the Philadelphia College of Osteopathic Medicine (PCOM). To ask questions about the study, please email Jodi Yarnell, Ed.S. at lqtstudies@pcom.edu or call (215) 871-6464 and leave a message. Someone will contact you promptly.
Children ages 9 to 17 years old with a diagnosis of Long QT Syndrome (LQTS) and their parents are needed for participation in a Workshop in Philadelphia, PA. Children and their parents will come to Philadelphia College of Osteopathic Medicine (PCOM) for a one day workshop from 9am-1pm. Food and drinks will be provided on the day of the workshop. Participants will learn new skills, tools, and ways to manage LQTS. There will be 2 follow-ups at 1- and 3- months following the workshop. Both parent and adolescent will receive a $10 gift card to a national retailer for participation in each follow-up phone calls/online survey.
This study is being led by Stephanie Felgoise, Ph.D., ABPP at (PCOM) in collaboration with Vicki Vetter, MD, at the Children's Hospital of Philadelphia. To ask questions about the study, please email the study team at lqtstudies@pcom.edu.
Please email us if you are interested in participating in a study looking at the quality of life of siblings of children with Long QT Syndrome. Children/Adolescents ages 8 to 18 years old are needed for participation with this study. If you are interested in participating in this study, please respond by e-mail so that we can contact you with further information. Participants will receive 2 movie tickets to their local movie theatre. To let us know, or if you have any further questions, please feel free to e-mail us at lqtstudies@pcom.edu.
Children diagnosed with LQTS ages 6 to 12 years old are needed for participation in a research study. If you are interested in participating in this study please e-mail with your full name so that we can contact you with further information. Participants will receive 2 movie tickets to their local movie theatre. To let us know, or if you have any further questions, please feel free to e-mail us at lqtstudies@pcom.edu.