A new clinical drug trial has begun to evaluate the safety, tolerability and efficacy
of an investigational product called Sarizotan, in reducing breathing abnormalities
in patients with Rett syndrome. Newron Pharmaceuticals, a biopharmaceutical company
focused on the development of novel therapies for patients with diseases of the
Central Nervous System (CNS) and pain, is sponsoring this global clinical trial,
and needs your help.
Breathing abnormalities are one of the most debilitating symptoms for so many girls
and women with Rett syndrome. Please take the time to review the criteria and consider
participating. Criteria include females age 13+, with a body weight of at least
55 pounds, who experience multiple episodes of breath-holding during the hours
while the girls and women are awake.
It is our mission to find treatments that relieve symptoms while we work towards
a cure. You are a critical partner in this effort. Please consider participation
in this trial. If you are interested in this study, please follow these steps:
1. Visit our newly revised Clinical trials page to see more information on this
study. https://www.rettsyndrome.org/research/clinical-trials
2. Contact Susan Rohde at Rush with enrollment questions
Rush Medical University Center, Chicago
Call Susan Rohde at 312-942-0079 or Email: susan_rohde@rush.edu
Principal Investigator: Peter Heydemann, MD
Neuren Pharmaceuticals is currently conducting a Phase II clinical trial of a potential new treatment for pediatric Rett Syndrome (females aged 5-15 years).
This is taking place invarious locations across the US, one of which is at Rush University in Chicago.
Rush University just activated their fifth site in the study. Rush University Medical Center, IL is now open for enrollment.
If you are interested in participating in the Rett-002 study at this site, please contact:
Rush University, IL
Contact: Anna DeSonia
Phone: 312-563-6636
Email: Anna_m_DeSonia@rush.edu
If you wish to learn more about the study, please go to this website:
https://clinicaltrials.gov/ct2/show/NCT02715115?term=nnz-2566&rank=6
Neuren also has their own website which provides additional information on the Rett-002 study: www.rettstudy.com. Latest updates on the study can also be found on the rettsyndrome.org Facebook page.
We will pass along additional information about the study as it becomes available.