The Cute Syndrome Foundation: SCN8A Epilepsy Support, Awareness, and Research
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SCN8A Clinical Trials

Neurocrine Biosciences: NBI-921352


TCSF is thrilled to announce that Neurocrine Biosciences' SCN8A study is now up on clinicaltrials.gov.

SEE IF YOU OR YOUR CHILD MAY QUALIFY
This is a study to evaluate NBI-921352 as adjunctive therapy in subjects with SCN8A Developmental and Epileptic Encephalopathy Syndrome (SCN8A-DEE) in patients age 12-21*. This is the first SCN8A specific clinical trial and is a huge step forward for our community! Click the link above to learn more about inclusion and exclusion criteria.
*As of January 2022, the FDA accepted Neurocrine's protocol amendment that expands the study population to include subjects aged between 2 and 11 years as well.

To learn more about this study, you or your doctor may contact the study research staff:
Neurocrine Medical Information Call Center
877-641-3461
medinfo@neurocrine.com
ClinicalTrials.gov identifier (NCT number): NCT04873869

​Trial Sites

(USA only, More sites to come)

Recruiting
  1. Cook Children's Hospital—Fort Worth, TX
    Cook Children's Medical Center
    Fort Worth, Texas, United States, 76104
    Contact: Dianna Grado    682-885-2844
    ​Dianna.grado@cookchildrens.org 

  2. University of California San Francisco—San Francisco, CA
    ​UCSF Medical Center
    San Francisco, California, United States, 94158
    Contact: Lucy Liu    415-353-2437
    Lucy.liu3@ucsf.edu   

  3. Children's National—Washington, DC
    Children's National Hospital
    Washington, District of Columbia, United States, 20010
    Contact: Zachary Kramer
    zkramer@childrensnational.org   

  4. University of Rochester—Rochester, NY
    University of Rochester
    Rochester, New York, United States, 14642
    Contact: Noreen Connolly
    Noreen_Connolly@urmc.rochester.edu   

Not Yet Recruiting
  1. Ann & Robert H. Lurie Children's Hospital of Chicago—Chicago, IL
    Ann & Robert H. Lurie Children's Hospital of Chicago
    Chicago, Illinois, United States, 60611
    Contact: Savannah O'Neil
    sroneil@luriechildrens.org   

  2. Wake Forest Baptist Health—Winston-Salem, NC
    Wake Forest Baptist Health
    Winston-Salem, North Carolina, United States, 27157
    Contact: Carolyn Hedrick
    ​cwhedric@wakehealth.edu   

  3. Children's Hospital of Philadelphia—Philadelphia, PA
    Children's Hospital of Philadelphia
    Philadelphia, Pennsylvania, United States, 19104
    Contact: Jennie Minnick
    ENGIN@chop.edu   

  4. University of Utah—Salt Lake City, UT
    University of Utah
    Salt Lake City, Utah, United States, 84132
    Contact: Carly Straley
    clinicaltrialsoffice@hsc.utah.edu   

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The Cute Syndrome is registered as a tax-exempt organization under IRS section 501(c)(3).
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​Our tax identification number is: 46-2699066.

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  • Home
  • About
    • About SCN8A
    • About Us
    • Partner Organizations
    • Volunteers
    • Sponsors
    • 2020 Annual Report
  • Families
    • Caregiver Support
    • Join our SCN8A Community
    • SCN8A Warriors
    • Reference Guide
    • Resources
    • Shareable Graphics
  • Events
    • Annual SCN8A Clinician, Researcher, and Family Gathering >
      • CUTIES Awards
    • Researcher Roundtable
    • Awareness Day
  • Research
    • Research Grants
    • SCN8A Registry
    • Clinical Trials
  • Donate
    • How You Can Help
    • SCN8A Awareness Gifts
  • Contact
  • Gathering Family Portal
    • 2021 Annual Gathering >
      • Video Page
    • 2020 Annual Gathering >
      • Video Page
    • 2019 Annual Gathering >
      • Day 1 Agenda
      • Day 2 Agenda
      • Presentations
      • Speakers
      • Video Page
    • SCN8A Lexicon
  • Blog
  • Shop