Alabama
University of Alabama at Birmingham

Institution : University of Alabama at Birmingham

  • Principal Investigator : Alan K. Percy, MD
    • Project Manager : Jane Lane, BSN, RN
    • Contact : Jane Lane, BSN, RN
    • Address : 1720 2nd Avenue South, CIRC 320
      Birmingham, AL 35294-0021
    • Phone : (800)-822-2472 ext#7
    • Fax : (205)-975-6330
    • Email : apercy@uab.edu & jlane@uab.edu
California
University of California

Institution : University of California, San Diego

  • Principal Investigator : Richard Haas, MD
 
UCSF Benioff Children's Hospital of Oakland

Institution : UCSF Benioff Children's Hospital Oakland

  • Principal Investigator : Mary Jones, MD
    • Contact : Erica Robertson
    • Address : 744 52nd Street
      Oakland CA 94609
    • Phone : (510) 595-5458
    • Fax : (925)-979-4059
    • Email : mdjpedidoc@aol.com & ERobertson@mail.cho.org
    • Sub-investigators : Audrey Brumback, MD
Colorado
School of Medicine Children's Hospital Colorado

Institution : University of Colorado
www.childrenscolorado.org
www.medschool.ucdenver.edu
 
  • Principal Investigator : Tim Benke, MD, PhD
    • Address : 12800 E. 19th Avenue
      Aurora, CO 80045
    • Phone : (303)-724-3568
    • Fax : (720)-777-7285
    • Email : tim.benke@ucdenver.edu
 
Illinois
Rush University

Institution : Rush University Medical Center
www.rush.edu

 
  • Principal Investigator : Peter Heydemann, MD
 
  • Co-Principal Investigator : Elizabeth Berry-Kravis, MD
 
  • Contact : Susan Rohde
    • Address : 1725 West Harrison, Suite 718
      Chicago, IL 60612
    • Phone : (312) 942-0079
    • Fax : (312) 942-4168
    • Email : susan_rohde@rush.edu
Massachusetts
Children’s Hospital of Boston

Institution : Children’s Hospital of Boston

Minnesota
Gillette Children’s Specialty Healthcare

Institution : Gillette Children's Specialty Healthcare

  • Contact : Rachel Katoch, CCRC, BS
Missouri
Washington University School of Medicine St. Louis Children's Hospital

Institution : Washington University School of Medicine and St. Louis Children's Hospital
 
  • Principal Investigator : Robin Ryther, MD, PhD
    • Address : 660 South Euclid Avenue
      Campus Box 8111, MAT 817
      St. Louis, MO  63110-1093
    • Email : rytherr@neuro.wustl.edu
 
  • Contact : Olga Novak
    • Address : 660 South Euclid Avenue
      Campus Box 8111, MAT 817
      St. Louis, MO  63110-1093
    • Phone : (314) 454-4267
    • Fax : (314) 747-6599
    • Email : rettresearch@neuro.wustl.edu
Ohio
Children's Hospital Of Philadelphia

Institution : Cincinnati Children’s Hospital Medical Center

 
  • Contact : Max Mays
 

 

Pennsylvania
Children's Hospital Of Philadelphia
Institution : Children’s Hospital of Philadelphia
www.chop.edu
 
  • Principal Investigator : Eric Marsh, MD
    • Address : 3615 Civic Center Blvd
      Philadelphia, PA, 19104
    • Phone : (215)-590-1719
    • Email : marshe@email.chop.edu
 
  • Contact : Casey Gorman
    • Address : 3615 Civic Center Blvd
      Philadelphia, PA, 19104
    • Phone : (267)-426-5171
    • Email : GormanC@email.chop.edu
South Carolina

Institution : Greenwood Genetic Center
www.ggc.org

  • Principal Investigator : Steven Skinner, MD
    • Contact : Fran Annese
    • Address : 101 Gregor Mendel Circle
      Greenwood, SC 29646
    • Phone : (864)-941-8100
    • Fax : (864)-941-8114
    • Email : fran@ggc.org
Tennessee
Vanderbilt University

Institution : Vanderbilt University

  • Principal Investigator : Sarika Peters, PhD
    • Contact : Nicole Thompson
    • Address : 405A One Magnolia Circle
      Nashville, TN 37212
    • Phone : (615)-343-4586
    • Fax : (615)-322-8236
    • Email : nicole.i.thompson@vanderbilt.edu
    • Sub-investigators : Cary Fu, MD
Texas
Baylor College of Medicine

Institution : Baylor College of Medicine

  • Principal Investigator : Daniel Glaze, MD
Data Management and Coordinating Center
The Data Management and Coordinating Center does not enroll patients
 

Institution : University of South Florida Health Informatics Institute

  • Principal Investigator : Jeffrey Krischer, PhD
    • Contact : Amy Holbert, MA
      Research Project Manager
    • Statistician : Hye-Seung Lee, PhD
    • Address : 3650 Spectrum Blvd, Suite 100
      Tampa, FL 33612
    • Phone : (813)-396-9567
    • Email : Amy.Holbert@epi.usf.edu
Rettsydrome.org
Rettsyndrome.org

*The Rettsyndrome.org office does not enroll patients

Institution : Rettsyndrome.org