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Online Study of People Who Have Genetic Changes and Features of Autism: Simons Searchlight

StatusRecruiting
PhaseNot specified
Started
View on ClinicalTrials.gov ↗

Record History

See every version on ClinicalTrials.gov ↗

  1. Minor 2 versions Re-verified since Jun 3, 2025, no change to tracked fieldsv17-v18
  2. Notable Enrollment target: 5000 to 100000
    • Study sites revised (2)
    • Collaborators revised (3)
    v16
  3. Minor Re-verified, no change to tracked fieldsv15
  4. Minor Eligibility criteria shortened, about 31 wordsv14
  5. Minor 3 versions Re-verified since Nov 19, 2020, no change to tracked fieldsv11-v13
Show 9 earlier versionsHide 9 earlier versions
  1. Notable Primary endpoint revisedv10 Show 7 more changesShow less
    • Study sites: 1 to 2
    • Eligibility criteria shortened, about 108 words
    • Secondary endpoint revised
    • Study description shortened, about 46 words
    • Collaborators: 9 to 3
    • Study arms: 5 to 2
    • Study title expanded, about 1 word
  2. Minor Re-verified, no change to tracked fieldsv9
  3. Notable Primary and study completion dates: Jul 2018 to Oct 2050v8 Show 4 more changesShow less
    • Site details revised
    • Collaborators revised (9)
    • Eligibility criteria shortened, about 1 word
    • Study title shortened, about 5 words
  4. Minor Site contact updated
    • Collaborators revised (9)
    v7
  5. Minor Site contact updatedv6
  6. Minor Secondary endpoints: details revised at 1 of 1 entryv5
  7. Minor Re-verified, no change to tracked fieldsv4
  8. Notable Enrollment target: 200 to 5000v3 Show 8 more changesShow less
    • Primary and study completion dates: Jul 2012 to Jul 2018
    • Study sites: 3 to 1
    • Eligibility criteria expanded, about 160 words
    • Study description expanded, about 174 words
    • Collaborators: 5 to 9
    • Publications: 1 to 4
    • Study title expanded, about 9 words
    • Study arms: 2 to 5
  9. Minor Eligibility criteria expanded, about 25 wordsv2
  1. Minor Study First Submitted
  • Stopped: an ongoing trial was terminated, suspended or withdrawn.
  • Notable: the trial’s plan changed such as a big move in its timeline or size, a new primary endpoint, sponsor or phase, or recruiting opened or resumed.
  • Minor: routine progress and housekeeping, such as sites added or enrollment closed.
Simons Searchlight is an observational, online, international research program for families with rare genetic variants that cause neurodevelopmental disorders and may be associated with autism. Simons Searchlight collects medical, behavioral, learning, and developmental information from people who have these rare genetic changes. The goal of this study is to improve the clinical care and treatment for these people. Simons Searchlight partners with families to collect data and distribute it to qualified researchers.
Trial Details
NCT Number NCT01238250
Lead Sponsor Simons Searchlight
Collaborators: Geisinger Clinic, Boston Children's Hospital, Simons Foundation
Conditions
(from sponsor)
16P11.2 Deletion Syndrome, 16p11.2 Duplications, 1Q21.1 Deletion, 1Q21.1 Microduplication Syndrome (Disorder), ACTL6B, ADNP, AHDC1, ANK2 +179 more
Related terms 15q24 Microdeletion, 16p11.2 Deletion Syndrome, Chromosome 15q13.3 Microdeletion Syndrome, Chromosome 17q21.31 Deletion Syndrome, Chromosome 1q21.1 Deletion Syndrome, 1.35-Mb, Chromosome 1q21.1 Duplication Syndrome, Chromosome 2q37 deletion syndrome, Cornea Plana 1, Cri-du-Chat Syndrome, Epileptic Encephalopathy, Early Infantile, 4, Hereditary Sensory and Autonomic Neuropathies, Rhabdoid Tumor Predisposition Syndrome 2
Enrollment 100,000 participants
Start Date
Primary Completion (estimated)
Study Completion (estimated)
Updated on ClinicalTrials.gov