Rett Syndrome Association of Illinois

Clinical Trials

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


2.     Contact Susan Rohde at Rush with enrollment questions

Rush Medical University Center, Chicago

Call Susan Rohde at 312-942-0079 or Email:

Principal Investigator: Peter Heydemann, MD

Stars Study Flyer



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

If  you wish to learn more about the study, please go to this website:


Neuren also has their own website which provides additional information on the Rett-002 study: Latest updates on the study can also be found on the Facebook page.

We will pass along additional information about the study as it becomes available.