Study Opportunity
University of Minnesota
Teaching Communication Skills in Rett Syndrome: Intervention Delivered In-home over Video-conferencing
Purpose: We are interested in examining the effects of behavior assessment conducted via telehealth on acquisition of communicative behavior for girls and women with Rett Syndrome.
Where do these studies take place? Assessment and training of communication is often most beneficial when studies take place in the natural settings of the individual. Therefore, assessment and intervention sessions will take place in homes and other natural settings. We will connect with your family via telehealth (video conferencing) to coach the assessments and interventions.
What do telehealth sessions look like? Telehealth sessions use video - conferencing software to connect you in your home remotely with study personnel at the University to receive assessment, observation, and coaching on communication training.
Do I need special equipment/computer skills? No, we can loan needed equipment and will provide technology coaching to connect and manage the technology.
Are there any costs to participating? There is no cost and no compensation to participate in the study. All materials will be provided free of charge.
Are there potential benefits to participating? There may be potential benefits to participating through gains in communication and to contributing to the understanding of communication intervention in Rett Syndrome.
Criteria: All ages, ability levels, and diagnoses (Classic, atypical Rett Syndrome, MECP2 duplication syndrome) welcome to participate.
If you are interested in participating, please contact Jennifer McComas, Ph.D, the project coordinator, at 612-626-7653 or jmccomas@umn.edu
Rett Syndrome Drug Research Opportunity
Sarizotan (focuses on respiratory abnormalities)
Some highlights:
“The STARS clinical research study is evaluating an investigational medication to see if it is safe and effective in reducing the number of daytime apnea and other breathing episodes in people who have Rett Syndrome with irregular breathing.
Approximately 130 people who have Rett Syndrome with irregular breathing will participate in the STARS study. A person with Rett Syndrome may be eligible to join the study if he or she:
• Is at least 6 years old
• Weighs at least 22 pounds or 10 kilograms
• Has episodes of irregular breathing while awake during the day
• Meets other study participation requirements
Sites: Alabama, California, Illinois, Texas
Visit the study website to complete a questionnaire: www.RettSTARS.com”
Gillette Children's participating in Neuren Pharmaceuticals conducting Phase II study of Trofinetide (NNZ-2256) in Rett Syndrome
***** Update (3/12/2018) - Phase III was approved by the FDA and is coming to Gillette soon! *****
Neuren Pharmaceuticals will be conducting a Phase II of Trofinetide, also known as NNZ-2566, for females age 5-15 with Rett Syndrome. The study will be taking place in various locations across the US, one of which being at Gillette Children's Specialty Healthcare in St. Paul, MN.
The study is currently listed on the clinicaltrials.gov website. (https://clinicaltrials.gov/ct2/show/NCT02715115), and you can also visit www.rettstudy.com for further information on the study.
Gillette Children's Specialty Healthcare is not yet able to recruit participants, as they are waiting to receive approval to conduct the study through their Institutional Review Board. This should occur in the coming weeks.