Current Clinical Trials & Research

Updated 10/16/17

 

Pharmacological Interventional Clinical Trials

 

Study Name Study Location Coordinator Email  Coordinator Phone 

Evaluation of the Efficacy, Safety, and Tolerability of Sarizotan in Rett Syndrome With Respiratory Symptoms              

University of Alabama at Birmingham

Birmingham,AL

 jlane@uab.edu

 1-205-996-4927

 

Altman Clinical & Translation Research Institute- Rady Children’s Hospital/UCSD

San Diego, CA

 kditslear@ucsd.edu

 1-858-246-2288

 

Rush University Medical Center

Chicago,IL

 susan_rohde@rush.edu  

 1-312-942-0079

 

Texas Children’s Hospital

Houston, TX

Mohammad.Naqvi@bcm.edu

 1-832-824-3634

NNZ-2566 Phase 2 Trial  -Trofinetide   No longer recruiting    
Treatment of Rett Syndrome with Recombinant   
Human IGF-1  (Phase 2)
No longer recruiting    
ANAVEX 2-73 pre-qualifying online survey http://www.rettsyndrometrial.com    
       

 

Observational Clinical Studies

 

Study Name Study Location Coordinator Email  Coordinator Phone

Natural History Study

 

University of Alabama at Birmingham

Birmingham, AL

 For NHS site contact information,

click HERE

 

 

Baylor College of Medicine

Houston, TX

 

 

 

Children's Hospital Boston

Boston, MA

 

 

 

Greenwood Genetics Center

Greenwood, SC

 

 

 

Children's Hospital of Philadelphia

Philadelphia, PA

 

 

 

University of Rochester Medical Center

Rochester, NY

 

 

 

Cleveland Clinic

Cleveland, OH            *CDKL5 only

 

 

 

Rady Children's Hospital/ UCSD

San Diego, CA

 

 

 

Vanderbilt University Medical Center

Nashville, TN

 

 

 

Rush University Medical Center

Chicago, IL

 

 

 

UCSF  Benioff Children's Hospital

Oakland, CA

 

 

 

Cincinnati Children's Hospital

Cincinnati, OH

 

 

 

Gillette Children's Specialty Healthcare

St Paul, MN

 

 

 

St Louis Children's Hospital

St Louis, MO

 

 

 

University of Colorado

Aurora, CO

 

 

Biobanking of Rett Syndrome and Related
Disorders

University of Alabama at Birmingham

Birmingham, AL

 jlane@uab.edu 

 1-205-934-1130

 

Children's Hospital  Boston

Boston, MA

 Lindsay.Swanson@childrens.harvard.edu 

 1-617-355-8994

 

Gillette Children's Specialty Healthcare

St Paul, MN

 

 

 

Vanderbilt University

Nashville, TN

 Nicole.i.thompson@vanderbilt.edu 

 1-615-343-4586

 

Baylor College of Medicine

Houston, TX

 jg20@bcm.edu 

 1-832-822-1781

 

Rush University Medical Center

Chicago, IL

 susan_rohde@rush.edu  

 1-312-942-0079

 

University of California, San Diego

San Diego, CA

 kditslear@ucsd.edu

 1-858-246-2288   

 

Non-Pharmaceutical Clinical Research

 

Study Name Study Locations  Coordinator Email Coordinator Phone 
Visual Attention to Print in Children with Rett Syndrome

Appalachian State University

Boone, NC

koppenhaverd@appstate.edu

 

 

UNC Center for Literacy & Disability

Chapel Hill, SC

 clds@unc.edu

 

Auditory Assessment of Language and Learning

Vanderbilt University

Nashville, TN

 dorita.jones@vanderbilt.edu

 1-615-343-1961

Improving Upper Extremity Motor Skills in
Persons with Rett Syndrome Using Virtual Reality Computer Games
Baltimore, MD  psd23@georgetown.edu  1-240-381-1763
  Washington DC  psd23@georgetown.edu  1-240-381-1763
Rett syndrome: Tailoring treatment based on communication needs

University of Minnesota Department of Educational Psychology

St Paul, MN

 sima0034@umn.edu

 

Communication services and support for
individuals with Rett syndrome: a survey for families

Maastricht University

Maastricht, Netherlands

g.townend@maastrichtuniversity.nl 

 

Assessing Oculomotor Control in Rett Syndrome
Using Integrated EEG & Eye Tracking Technology

University of Minnesota

St Paul, MN

 byier001@umn.edu

 1-612-626-7892