Using Telehealth to Reduce Problem Behavior and Improve Maternal Mental Health
Free Treatment Study!
Are you a mother of a child with Fragile X Syndrome? Would you like free parent training?
At St. John’s University, we are conducting a research study on the effectiveness of a parent training program for parents of children with Fragile X syndrome. We are currently seeking mothers to volunteer to participate in this parent training program.
This study might be right for you if:
- You are the mother of a child who has Fragile X syndrome (full mutation)
- Children are between the ages of 3 and 12 years old.
- You and your child live in the same home.
- Your child displays serious challenging behaviors such as physical aggression, self- injury, property destruction, or non-compliance.
The potential benefits of the study are:
- You may increase your knowledge of your child’s challenging behaviors and empirically supported strategies for addressing challenging behaviors.
- The parent training program may also benefit you by helping you to reduce your child’s challenging behaviors and improve your family’s quality of life.
For more information on this study or to request a screening packet, please contact:
Ms. Carmen Mootz, M.A.
Principal Investigator
916-804-1985
carmen.mootz14@stjohns.edu
or her faculty sponsor:
Dr. Lauren Moskowitz, Ph.D.
718-990-6418
moskowil@stjohns.edu
Our Most Recent Opportunities
Study: Behavioral and Cognitive Inflexibility in Fragile X Syndrome
Individuals with FXS who are 18 years or older and able to talk fluently about own experiences, and their caregivers and providers may be eligible to participate. Eligible providers include teachers, psychologists, social workers, and physicians.
Study: Adult Fragile X Premutation Carriers Needed for Registry
NFXF has partnered with an advisory committee of international fragile X professionals to create an international fragile X premutation research registry. Find out how to participate.
Survey: Cannabidiol (CBD) Use with Fragile X Syndrome
A Mount Sinai Genetic Counseling graduate student is conducting a research study to learn about possible benefits and side effects of CBD supplements when used to treat FXS symptoms. This information will be obtained by using an anonymous online parental and caregiver survey. About the Survey Who can participate? Parents and caregivers caring for somebody with FXS who uses, or has used, CBD supplements may be eligible to participate. The parent or caregiver responding to the survey must be at least 18 years old. The individual with ...
Survey: How has the COVID-19 Pandemic Impacted Fragile X Families
Researchers at Teachers College at Columbia University are conducting a survey to learn about the impact that the COVID-19 pandemic has had on multiple aspects of the lives of people with Fragile X Syndrome. We want to see how the Fragile X community specifically was impacted so that we can have a more focused plan of action for helping these families. The overall goal of this survey is to distribute our findings to medical professionals so that they can see what gaps have been created in their practices from the pandemic.
Exploring the Most Important Information for New Premutation Carriers
Participants of this study will explore what information is considered most important to recently diagnosed fragile X premutation carriers. Open to premutation carriers 18 and over who were diagnosed sometime since January 2018.
Parents and Caregivers of Adults with Fragile X Syndrome Needed for a Survey
Kaylynn Shuleski, a master’s in genetic counseling candidate, is conducting a research study to explore the concerns and challenges caregivers may face when planning long-term supports and living arrangements for their adult children with Fragile X syndrome (FXS). This information will be valuable for current and future families when considering long-term supports, as well as for healthcare professionals, counselors, and policy makers. About the Study Who can participate? Parents and caregivers of adults with full mutation ...
