Our Mission: To improve the health & quality of life for those with CDD

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      • Participate
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    • For Collaborators
    • About Us
      • Who We Are
      • Leadership
      • ICCRN Sites
      • Research & Publications
      • ICCRN Governance
    • Contact
  • Home
  • For Families
    • Participate
    • FAQ
  • For Collaborators
  • About Us
    • Who We Are
    • Leadership
    • ICCRN Sites
    • Research & Publications
    • ICCRN Governance
  • Contact

CDKL5 Centers of Excellence & ICCRN Research SItes: Location

CDKL5 Centers of Excellence & ICCRN RESEARCH SITES

Children's Hospital Colorado Hospital - Aurora, CO

Program Director/Principal Investigator: Dr. Tim Benke

ICCRN Director/ Principal Investigator: Dr. Scott Demarest

Project Manager: Gina VanderVeen

Research Coordinator: Flor Abila

 

The Kids Research Institute Australia - Perth, Australia

Principal Investigators: Dr. Helen Leonard  & Dr. Jenny Downs

Program Specialist: Jacinta Saldaris

Biostatistician: Peter Jacoby


Children's Hospital of Philadelphia - Philadelphia, PA

Principal Investigator: Dr. Eric Marsh

Genetic Counselor: Holly Dubbs

Research Coordinators: Rashmi  Rasbud & Jennie Minnick

Biomarker Specialist: Joni Saby

Boston Children's Hospital - Boston, MA

 Lead Investigator: Dr. Heather Olson

Co-Investigator: Dr. WIlliam Hong

Research Fellow: Isabel Haviland

Genetic Counselor: Lindsay Swanson

Research Coordinator: Cari Daniels

St. Louis Children's Hospital - St. Louis, MO

Lead Investigator: Dr. Judy Weisenberg

Research Coordinator: Olga Novak


Cleveland Clinic - Cleveland, OH

Lead Investigator: Dr. Elia Pestana-Knight

Research Coordinator: Xiaoming Zang

UCLA Mattel Children's Hospital - Los Angeles, CA

UCLA Mattel Children's Hospital - Los Angeles, CA

UCLA Mattel Children's Hospital - Los Angeles, CA

Lead Investigator: Dr. Raj Rajaraman

Research Coordinator: Angela Martinez


Texas Children's Hospital - Houston, TX

UCLA Mattel Children's Hospital - Los Angeles, CA

UCLA Mattel Children's Hospital - Los Angeles, CA

Lead Investigator: Dr. Bernhard Suter

Research Nurse: Mohammed Sameeruddin

Research Coordinator: Elif Dundar


NYU Langone Health Center - New York, NY

UCLA Mattel Children's Hospital - Los Angeles, CA

NYU Langone Health Center - New York, NY

Lead Investigator: Dr. Dana Price

Research Coordinators: Emanuel Belen & Juliana Laze


Our Partners

ACCORDS

International CDKL5 Clinical Research Network

Questions about our research?

iccrn@childrenscolorado.org

720-777-5514

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