P.O. Box 50030 London, ON N6A 6H8 info@rett.ca (519) 474-6877

STARS Study ~ Is your child living with Rett Syndrome?

Update April, 2017: This study is now open to patients 6 years and older (previously 13)

Rettland Foundation may provide travel assistance from Ontario to the Chicago site.

Is your child living with Rett Syndrome

There is a research trial to evaluate the safety, tolerability and efficacy of an investigational drug in reducing respiratory abnormalities in patients with Rett Syndrome

Patients may be eligible who: 

* are 6 years and older,

* have a body weight of at least 25 kg (55 lbs), and

* experience multiple episodes of breath holding (apnea) while awake during the day

The study is being conducted at the following locations. If you are interested to learn more about this study please see the link, https://clinicaltrials.gov/ct2/show/NCT02790034?term=newron&rank=2  or contact the site nearest to you.

United States


University of Alabama at Birmingham

Call Jane Lane at 205-996-4927 or Email: jlane@uab.edu

Principal Investigator: Alan Percy, MD


Altman Clinical and Translation Research Institute, La Jolla, San Diego

Call Karen Ditslear at 858-246-2288 or Email: kditslear@ucsd.edu

Principal Investigator: Jeffrey Neul, MD, PhD


Rush Medical University Center, Chicago

Call Susan Rohde at 312-942-0079 or Email: susan_rohde@rush.edu

Principal Investigator: Peter Heydemann, MD


Texas Children Hospital, Houston

Call Mohammad Naqvi at 832-824-3634 or Email: Mohammad.Naqvi@bcm.edu

Principal Investigator: Daniel Glaze, MD