Parental Decision Making Study

Parental Decision-Making Process and Post-Test Communication Around Predictive Testing for Children for vEDS

Study Coordinator

Emily Ecker (they/them) is a graduate student at the MGH Institute for Health Professions in Boston, Massachusetts, pursuing their masters in Genetic Counseling. Before their time at the IHP, they received their BA in Biology from Bryn Mawr College. During their time at Bryn Mawr, they fell in love with the study of genetics.

Genetic Counseling was particularly appealing to them because they had always wanted to become a teacher. This profession seemed like the perfect way to pursue teaching in a context that would allow for continued exploration into genetics while also providing tangible and important care for patients in need of counseling.

As an important part of their degree, Emily is completing a capstone research project titled “The Parental Decision-Making Process and Post-Test Communication Around Predictive Genetic Testing for Children for Vascular Ehlers Danlos Syndrome”.

With this project they hope to explore and better understand the considerations that parents with vEDS weigh as they decide whether or not to pursue testing for their children. It is Emily’s hope that this project will help genetic counselors and other health care providers better support families with vEDS as they make this difficult decision.

Study Details

Researchers at the MGH Institute of Health Professions are asking you to consider participating in the online Mass General Brigham Institutional Review Board (IRB) approved research study: “Parental Decision-Making Process and Post-Test Communication Around Predictive Genetic Testing for Children for Vascular Ehlers Danlos Syndrome”

Members of the Vascular Ehlers Danlos Syndrome community are invited to participate in this research study that seeks to explore the experiences of families that have considered predictive genetic testing (PGT) for Vascular Ehlers Danlos Syndrome (vEDS) for their children. We hope that this study will improve health care providers’ understanding of the parental considerations involved in decision-making surrounding PGT, the experiences of those tested for vEDS as children, and the family communication during this time. With this expanded understanding, we hope to be better able to support parents making this decision and families in this position.

Participation in this study involves completing a survey and an interview. The interview will be conducted virtually using Microsoft Teams video conferencing. If you would like to participate, please follow the link below to learn more about the research study and complete the survey. After completing the survey, you may be contacted by the study coordinator to schedule a time for the research interview. A $20 electronic gift card will be provided to participants who complete both the survey and interview and those who complete just the survey will be eligible to enter a raffle for 1 of 5 $20 gift cards.

The study can be found at the following link: https://redcap.link/VEDSResearch

If the link above does not work for you or for other questions about the study, please contact us at EECKER@MGHIHP.EDU.

Sincerely,

Emily Ecker, BA

Genetic Counseling Student,

Class of 2023

MGH Institute of Health Professions

Allison Cirino (PI)

MGH Institute of Health Professions