brandeis fragile x research

Seeking fathers of children with Fragile X syndrome to participate in a research study.

You are invited to participate in an online research survey to investigate the journey of fathers following their child’s Fragile X diagnosis, focusing on their support-seeking behaviours. As a part of my Master’s thesis at Brandeis University, I am looking to understand the unique experience of fathers, in order to determine what improvements can be made to services provided by healthcare providers and organizations to better meet their needs.

This study is open to fathers of at least one child diagnosed with Fragile X syndrome within the past 10 years (≥ 2006).

The specific goals of this research study are to:

  1. Understand the father’s experience during the diagnostic odyssey, including their satisfaction with the healthcare providers.
  2. Identify factors that influenced the father’s decision to seek out support and their satisfaction with the support they received.
  3. Determine what improvements can be made to the services provided by healthcare providers and organizations to better meet their needs.

This anonymous survey will take an average of ten minutes of your time. All participants who complete the survey will have the opportunity to enter a drawing for one of three $50 Amazon gift cards. Your survey responses will not be connected to your email address.

This study was reviewed and approved by the Brandeis University Institutional Review Board. If you wish to be a part of this study, please click the link provided below.

If you have any questions, concerns or comments, please feel free to contact me by email at amann5@brandeis.edu, or the Brandeis University faculty sponsor, Sharyn Lincoln, at Sharyn.Lincoln@childrens.harvard.edu or 617-355-4688.

Thank you in advance for your time and participation. Please complete the survey by February 24, 2017.

Sincerely,

Aman Mann
Master’s Degree Candidate, Class of 2017

Sharyn Lincoln, MS, CGC
Program Coordinator, Fragile X Program
Genetic Counseling Program, Boston Children’s Hospital
Brandeis University, Visiting Research Scholar, Brandeis Genetic Counseling program

Click here to take the survey.