Survey – Sex Chromosome Aneuploidies: Parent Perspectives on Delivery of Diagnosis
You are invited to participate in a research study that focuses on the experience parents have had while receiving a diagnosis of a sex chromosome aneuploidy (SCA) for their child. We are working closely with a few different organizations that provide support for individuals and families with a SCA, and we hope to hear about your experience. This study seeks to better understand how to best help future families upon a diagnosis of a sex chromosome aneuploidy.
Risks and Benefits
There are no foreseen risks in participating in this study. There is a potential for this information to benefit the medical community by ensuring that upon receiving a diagnosis of a SCA, families will receive appropriate care and information.
Your participation in this study will remain completely confidential and anonymous. This study will take approximately 15 minutes. Participation in this study is completely voluntary and you may withdraw at any time throughout the duration of the survey. You may omit any questions you do not wish to answer. This study has been reviewed by the Institutional Review Board (IRB) committee at Long Island University Post.
Meet the Investigator:
Hello, My name is Brianna Gross and I am originally from New Jersey. I received a bachelors of science degree in integrative neuroscience at Binghamton University and am almost complete with graduate school at Long Island University Post in which I am in the genetic counseling program. I became passionate about genetics when I was a toddler and fostered my interests in science classes and Youtube videos as an adolescent and teeneager. My specific interest in sex chromosome aneuploidies began my first year in college where I learned not only the biology behind sex chromosome aneuploidies but the injustices that have occured to individuals and families regarding a confirmation of a sex chromosome aneuploidy. I really hope to assist in the movement to properly educate health care professionals and society on sex chromosome aneuploidies.