{"id":559,"date":"2024-01-09T15:18:25","date_gmt":"2024-01-09T21:18:25","guid":{"rendered":"https:\/\/wp.uthscsa.edu\/chromosome-18\/?page_id=559"},"modified":"2024-01-17T10:26:46","modified_gmt":"2024-01-17T16:26:46","slug":"current-studies","status":"publish","type":"page","link":"https:\/\/wp.uthscsa.edu\/chromosome-18\/our-program\/current-studies\/","title":{"rendered":"Current Studies"},"content":{"rendered":"

[vc_row][vc_column width=”2\/3″][vc_column_text]For those individuals who have completed the primary enrollment there are \u00a0a variety of both short-term and ongoing studies in which they can participate. Some studies are limited to a group with a particular chromosome 18 change. Others are limited by the age of the participant. This is a partial list as studies change and new ones are under development all the time.<\/p>\n

Surveys of all participants to track developmental milestones and behavioral development conducted through the mail<\/strong><\/p>\n

    \n
  1. BASC-2 Structured Developmental History Booklet (BASC-2 SDH)<\/li>\n
  2. Gilliam Autism Rating Scale, Second Edition (GARS-2)<\/li>\n
  3. Gilliam Asperger\u2019s Disorder Scale (GADS)<\/li>\n
  4. Stress Index for Parents of Adolescents (SIPA)<\/li>\n
  5. Behavior Rating Inventory of Executive Function (BRIEF-P or BRIEF-AI depending on age)<\/li>\n
  6. Behavior Assessment System for Children, Second Edition (BASC-2)<\/li>\n
  7. Adaptive Behavior Assessment System, Second Edition (ABAS-II)<\/li>\n
  8. Vineland Adaptive Behavior Scales, Second Edition (Vineland-II)<\/li>\n
  9. Social Responsiveness Scale, Second Edition (SRS-2)<\/li>\n
  10. Medication record<\/li>\n<\/ol>\n

    Surveys of adult participants to track functional level and behavioral adaptation performed by mail<\/strong><\/p>\n

      \n
    1. BASC-2<\/li>\n
    2. BRIEF-AI<\/li>\n
    3. SRS-2<\/li>\n<\/ol>\n

      Video assessments of 18p- adolescents and adults<\/strong><\/p>\n

      Video assessment of speech and facial movement to monitor changes in speech articulation over time and to monitor facial movement for early signs of a muscular disorder. These evaluations are conducted at the Chromosome 18 family conference and remotely by sending an iPad for capturing the data to the participating family.<\/p>\n

      Finger tap test for 18q- adolescents and adults<\/strong><\/p>\n

      This evaluation is performed annually at the Chromosome 18 Registry family conference and is a measure of response time and an indirect measure of myelination.<\/p>\n

      Comprehensive clinical evaluation of people with microdeletions of chromosome 18.<\/strong><\/p>\n

        \n
      1. Sleep and breathing telemetry in people with 18q deletions using a wrist-worn device<\/li>\n
      2. Bleeding and clotting changes in people with chromosome 18p deletions or duplications<\/li>\n<\/ol>\n

        Current Basic Research Studies<\/h2>\n