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Fragile X Syndrome Clinical Trials: Expectations, Hope and Decision Making of Parents

Letter XWe invite you to participate in a research study on how parents of people with fragile X syndrome (FXS) experience and make decisions about FXS drug development clinical trials. The goal of this research study is to explore the personal story of parents who have experience with FXS drug development clinical trials.

Little is known about how parents make decisions about these trials or how the trials impact the experience of parenting an individual with FXS. We hope this study will provide insight into the needs of parents who are making these decisions or are currently participating in a trial so that better care can be provided in the future.

The study involves phone interviews with a parent of a person with FXS. Each interview will last about 30-45 minutes and involve questions about the experience of making a decision about clinical trial participation or the experience of clinical trial participation itself. We will also collect general demographic information.

If you are a parent of a person with FXS (of any age), you can take part in the study if:

  • You are 18 years of age or older and speak English.
  • You have a child who was enrolled in a drug development clinical trial for FXS in the past OR ...
  • You have declined an offer of clinical trial participation for your child with FXS OR ...
  • You are currently considering drug-development clinical trials for your child with FXS.

Out of respect for volunteering time for the interview, participating parents will be sent a $15 Target gift card.

If you are interested in participating in the study, or would like more information, please contact the research fellow, Celeste Schepp D'Amanda, by email.

Thank you for your time and consideration to take part in this study. We look forward to hearing from you.

Sincerely,

Celeste Schepp D'Amanda
Research Fellow
JHU/NHGRI Genetic Counseling Training Program
Email: celeste.d'amanda@nih.gov

Barbara Biesecker, Ph.D.
Principal Investigator
Social/Behavioral Research Branch
NHGRI

Alexis Heidlebaugh
Research Coordinator
Social/Behavioral Research Branch
NHGRI

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Last Updated: September 1, 2016