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SETBP1 Society
  • About Us
    • Faces of SETBP1
    • Our Mission
    • Board of Directors
    • Medical & Scientific Advisory Board
    • Volunteers
    • Partners
  • For Families
    • Newly Diagnosed
    • SETBP1 Society Contact Registry
    • Natural History Studies
    • Understanding SETBP1 Science
    • Common Questions
    • SETBP1 Community Map
    • Doctors Studying SETBP1-HD
    • Simons Searchlight SETBP1 Registry
    • State Waivers
    • Get Involved
  • Resources
    • Newsletters
    • Videos
  • Research
    • What is SETBP1?
    • Funded Research
    • Simons Searchlight
    • SETBP1 Data Collection Program
    • Speech Tracker Study
    • SETBP1 Community Research Study (SCoReS)
    • SETBP1 Dashboard
    • Publications
  • Get Involved
    • Events
    • In the News
  • Store
  • Donate
Simons Searchlight Registry Updates for SETBP1

Simons Searchlight Registry Updates for SETBP1

Simons Searchlight Registry Updates for SETBP1

Simons Searchlight hosts our official SETBP1 registry. They began releasing quarterly updates in 2021 and you can view them below.

Click to access SETBP1_Q3_2023.pdf

Simons Searchlight SETBP1 Registry Q3 2023 Results
Q3 2023
Simons Searchlight SETBP1 Registry Q2 2023 Results
Q2 2023
Simons Searchlight SETBP1 Registry Q4 Results
Q4 2022
Simons Searchlight SETBP1 Registry Q2 Results
Q2 2022

Simons Searchlight SETBP1 Registry Q1 Results
Q1 2022
Simons Searchlight SETBP1 Voice of the Community
Simons Searchlight SETBP1 Voice of the Community 2021
Simons Searchlight SETBP1 Registry Q4 Results
Q4 2021
Simons Searchlight SETBP1 Registry Q3 Results
Q3 2021

Simons Searchlight SETBP1 Registry Q2 Results
Q2 2021
Simons Searchlight SETBP1 Registry Q1 Results
Q1 2021

What is SETBP1?

SETBP1 haploinsufficiency disorder is a very rare disorder that is the result of a loss-of-function of one copy of the SETBP1 gene and causes a spectrum of symptoms ranging from absent speech to expressive language delays, mild-severe intellectual disability, autistic-traits or autism, developmental delays and ADHD.

Read more >
SETBP1 Haploinsufficiency Disorder guide >

GIVING

Please consider making a gift to SETBP1 Society with the PayPal button below to fund research into SETBP1 haploinsufficiency disorder.

LEARN MORE

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To find out more about our organization, email us at info@setbp1.org.

© SETBP1 Society - P.O. Box 301584 Austin, TX 78703 - 512-522-8072 - SETBP1 Society is a not-for-profit 501(c)(3) organization. Our federal tax ID number is 82-0891558.
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