Behavioral Correlates of the Rett Microbiome

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Updated on 14 February 2022


Behavioral Correlates of the Rett Microbiome: The symptoms of Rett syndrome (RTT) are not only neurological, but frequently include gut problems, difficulties with nutrition, and altered levels of gut bacteria and bacterial metabolites. Gut distress and alterations in gut bacteria have been linked to numerous disorders, including anxiety, depression, stress, and irritability. Changing gut bacteria via diet and probiotics is associated with improvement of not only gut symptoms, but also improved behavior and quality of life. Therefore, better understanding of the gut bacteria in individuals with RTT represents a new area of treatment to relieve pain and improve RTT-associated behavior. The purpose of this study is to correlate the composition of gut bacteria found in stool to the genotype (MECP2 mutation) and phenotype (behavior & gut function) of individuals with Rett syndrome (RTT). We hypothesize that altered types and amounts of gut bacteria are associated with a more severe genotype-phenotype in RTT.

At your regularly scheduled Texas Children's Hospital Rett Center clinic visit, you would complete this consent form and 2 questionnaires about your child's Rett behavior and symptoms, provide a brief medical history and some answers to 2 additional questionnaires, and permit a non-invasive physical exam and saliva collection on your child. You will then be sent home with all instructions and supplies needed to complete and return a 3-day diet diary and stool sample collection on your child, in the comfort of your own home. We ask that you complete and return the diary and sample within 1 week of your clinic visit. 


Does your child have hard-to-control gut issues? Have you noticed a connection between your child’s gut issues and Rett behaviors? Dr. Kathleen Motil and her team are trying to understand why. We believe gut bacteria (yes! Gut bugs!) may play a role in making your child's gut issues and/or Rett behaviors better or worse. We are collecting data from girls with a diagnosis of Rett Syndrome (ages 3-17 years). Participation involves two components: (1) the first will occur at your next regularly-scheduled Texas Children's Blue Bird Circle Rett Center clinic visit, and (2) the second you can conduct in the comfort of your own home. At the clinic, there will be some surveys about behavior, review of medical history, a non-invasive physical exam, and saliva collection. At your home, there will be a 3-day diet log and stool collection (return shipping label/fee provided). From the stool sample, the scientists will determine what gut bacteria are present in your daughter's gut and try to determine a specific gut bug is related to her Rett behaviors. 

Condition Rett Syndrome
Clinical Study IdentifierTX271253
Last Modified on14 February 2022


Yes No Not Sure

Inclusion Criteria

US only

Exclusion Criteria

Received antibiotics within 6 months, has had diarrhea associated with an
acute infection in the past 2 week from time of clinic visit
Clear my responses

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