Posted at December 16, 2013 | By: | Categories: Opportunities for families | 3 Comments

Brandeis University Looking for Girls with FXS Aged 13+

This announcement has been posted as a courtesy by the National Fragile X Foundation (NFXF) on behalf of Lindsey Stobie, Masters candidate in the Genetic Counseling Program at Brandeis University. The announcement and the parties conducting and sponsoring the research meet guidelines established by the NFXF regarding relevancy and appropriateness to Fragile X. The NFXF takes no position and makes no claims as to the potential benefits of the study including those studies involving medications, and cannot be responsible for any outcomes, lack of outcomes or unintended side effects. Your name or other personal information have not been shared with the researchers/company/institution. If interested in participating in this research, it is your responsibility to use the contact information in this announcement. Additional opportunities for being part of research studies can be found at research.fragilex.org.
Do you have a daughter with fragile X syndrome?

Brandeis Fragile X ResearchI am a graduate student in the Genetic Counseling Program at Brandeis University. I am seeking volunteers to participate in a qualitative research project. The goal of this study is to explore the experiences of parents of symptomatic girls with FMR1 full mutations who have discussed the diagnosis with their daughter. Only parents who have gone through this process, like you, have this knowledge. It is our hope that the knowledge we gain from this study will inform future parents, genetic counselors and other health care professionals.

Participation in this study is voluntary and open to parents who:

  • Are 18 years of age or older.
  • Parent who self-identifies as the parent who had major conversations with their daughter.
  • Daughter much be a symptomatic FMR1 full mutation carrier and 13 years or older.
  • Must have informed their daughter of the FXS diagnosis.
  • Speak fluent English.

Following a brief phone questionnaire to assess eligibility, participants will be asked to take part in one audiotaped telephone interview that will last approximately 30 to 45 minutes. All participants will be given a $25 gift card to Amazon.com as a token of appreciation for donating their time. I hope to have all interviews completed by February 2014.

All identifying information of participants will be kept confidential and will be destroyed after completion of the study. Identifying details will be changed to protect the privacy of the participants.

If you are interested in participating in this study, please contact me by email at lstobie@brandeis.edu by January 15, 2014.

I appreciate your willingness to participate in this study and look forward to hearing from you.

Sincerely,

Lindsey Stobie
Genetic Counseling Graduate Student
Brandeis University
Waltham, MA

 

Brandeis University’s Intuitional Review Board: #14054