The NFXF is looking for 10 parents of children with a diagnosis of Fragile X syndrome, including both males and females, from all over the country, to participate in a market research opportunity related to medications. If selected, your contact information would be given to a pharmaceutical market research company.

The pharmaceutical market research company is looking for parents with children in these age groups.

  • 3-7 years of age
  • 8-12 years of age
  • 13-18 years of age

Research Process

There are two parts to this research – there will be a pre-qualifying phone call that takes place first. – The first phase will be 5 days of online bulletin boards which will take approximately 20 minutes each day to complete. Over the course of five days questions will be posted and the parent must respond. They will also ask for photos to be uploaded. These bulletin boards must be completed in order to qualify for the second part of the research.

The second phase of the research last approximately 60 minutes and will be conducted via telephone with web.

Current timeline: The bulletin boards start on January 17 and go for 5 days. You must be able to start on that day. The phone interview will take place in the last two weeks of January, with a mutually agreed-upon time.

The ten parents will each be compensated $300 for their time.

This market research company is doing the research for a pharmaceutical company. The parents will not be told the name of the pharmaceutical company, and the pharmaceutical company will not be told the names of the parents.

In addition to the caregiver confirming that they care for a child with Fragile X syndrome, the market research company will also gather the information below:

  • Relationship to the child
  • Age of child
  • How long the child has been diagnosed
  • Name, email address, and phone number in order to contact them for the study.

How to Participate

The market research company would like to start the online bulletin boards on January 17, 2018.

In order to be considered, please email Jayne Dixon Weber jayne@fragilex.org with the following:

Subject Line: Market Research Recruitment

In the body of the email:

  • Your name/email
  • Child’s age/sex
  • City where you live.