Research on the Diagnostic Journey

September 29, 2020
Emily Soludczyk, Genetic Counseling Student and former Dup15q Alliance intern is conducting a research study on the genetic diagnosis experience and feelings of parents with children diagnosed with Dup15q Syndrome.
Your participation may provide insight into recommendations that can improve the delivery of the Dup15q Diagnosis.
Do you qualify to participate in this research?
  • Have you received your or your child’s Dup15q Diagnosis in the past 5 years?
    • We wanted to make sure that the diagnosis had occurred after the advancements of new genetic
      testing options.
  • Are you one of the biological parents?
    • Because dup15q is a genetic condition and the symptoms are impacted by whether or not it is
      inherited from mom or dad we want to make sure we were surveying the biological parents for
      this survey.
  • Do you speak English?
    • Unfortunately we are unable to afford to have the survey transcribed to other languages.
If you have questions contact:
Emily Soludczyk at emily.soludczyk@bcm.edu or Supervisor: Rachel Franciskovich at rdwills@texaschildrens.org or (936) 267-7739.
Please Register with our LADDER Database to participate: https://laddertotreatment.org/user/register

 

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