Dr. Lawrence T. Reiter, a researcher from the University of Tennessee Health Science Center, is conducting a research study to learn about the molecular changes that occur in neurons in individuals with autism.
Participation
Who can participate?
Any individual with a confirmed clinical genetic diagnosis of Fragile X syndrome who is losing baby teeth or having a tooth extracted for dental purposes may be eligible to participate. There is no formal age limit to participation. Your child does not need to have an autism diagnosis to participate. You will need to show a copy of a genetics report that says your child has FXS.
What will happen in the study?
You will be asked to provide your child’s genetic testing to confirm their Fragile X syndrome diagnosis.
If your child qualifies and you decide to participate in this research study, you will only need to request a collection kit. This kit includes the consent form, social communication questionnaire (SCQ), tube of media, and a return kit with free FedEx shipping included. The investigator will need your mailing address to send the kit. You do not need to travel for this study.
You will be asked to complete the social communication questionnaire and provide any previous autism diagnostic testing, if available in your child’s medical record. You will be asked to collect the tooth when it falls out or is extracted at the dentist. Using the provided return kit, you will package the tooth and forms and return via FedEx within 48 hours of the tooth exiting your child’s mouth.
What are the good things that can happen from this research?
Your child’s tooth will be made into neurons in Dr. Reiter’s laboratory. The neurons can be used for RNA sequencing and protein studies. These studies may reveal changes in neurons from individuals with Fragile X syndrome vs. other forms of autism. These studies could lead to better understanding the impact of the FMR1 protein and how to treat Fragile X.
What are the bad things that can happen from this research?
There are no physical risks to participation. There is risk of loss of confidentiality, including your child’s personal health information (PHI) and/or social communication questionnaire results. Safeguards are in place to ensure that no personal health information will be associated with the neurons made from your child’s tooth. Only diagnosis (i.e., FXS) and score on the social communication questionnaire will be associated with the de-identified neurons.
There may be other risks that we do not know about yet.
Will you/your child be paid to complete this survey?
Participants may receive up to $10 for the contribution of their tooth/teeth. The participant will not receive more than $10 for their participation.
Our Most Recent Opportunities
Study: Autonomic and Sensory Functioning in Infants with FMR1 Conditions
Dr. Jane Roberts and the research staff at the Neurodevelopmental Disorders Laboratory at USC are conducting a research study to learn about the development of infants with Fragile X syndrome and Fragile X premutation over the first few years of life.
Survey: Research Experiences in Fragile X Families
The Brain and Biomarker Lab at the University of Oklahoma is conducting a survey to learn about experiences with research, particularly biomedical research, in families with Fragile X syndrome (FXS).
Study: Language Study for Children and Adolescents with Fragile X syndrome
Researchers at the University of Wisconsin-Madison and the University of Massachusetts-Amherst are conducting a study to learn about links between learning and language in Fragile X syndrome.
Survey: Fragile X Nutrition Survey
The University of Wisconsin-Madison is conducting a survey to learn about associations between infant feeding and neurodevelopment in children with Fragile X syndrome.
Clinical Trial: Phase 2B/3 Studies of BPN14770 in Fragile X syndrome
Tetra Therapeutics is conducting a two randomized, placebo-controlled studies of BPN14770/zatolmilast to learn about the experimental drug’s safety and efficacy for males ages 12-45.
Study: Aging in Toolbox
Researchers around the country are conducting a study to better understand cognitive profiles in adults with intellectual disability. This study is an extension of the ongoing Toolbox Study, which is aimed to optimize cognitive assessment tools for children and young adults with intellectual disabilities.