News from the ASXL Registry

Exciting news from the ASXL Registry! Out of 33 families who have completed the  enrolment, 15 surveys are completed! To obtain accurate knowledge about causes, symptoms, quality of life and treatments for Bohring-Opitz Syndrome, it is important that more families enrol the ASXL Registry and we need your support. A well run registry helps produce scientific literature and leads to research findings which is crucial to help our children live a better life.

Do you want to be part of the ASXL Registry? Please follow these steps:

  • Step 1: Email
  • Step 2: 15-30 minute phone call to review the consent form and answer questions
  • Step 3: Sign consent form and send it back.

More information you can find in the first newsletter of the ASXL Registry!

Thank you!