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Thank you for your submission!

A member from our team will be in touch to schedule your online assessments. We look forward to working with you and your family!

Next Steps

We hope to make participation in Project FIND-OUT easy for you and your family. Participation in any part of this research is voluntary. Please continue with the following steps:

Enrollment Completed!

  1. If you need help at any step in the process, please email the research team at ClinicalTeam@ProjectFINDOUT.com

Participate in an online assessment which will be split into two appointments

  1. A one hour meeting to discuss the study and complete forms about your baby’s development
  2. A 15-minute online assessment with you and your baby. The assessment will be scheduled at a time convenient for you via FaceTime or Zoom. You and your baby will both need to participate in the second assessment.

Collect a sample from your child

  1. The genetic testing kit will be mailed to you. You will collect the sample from your child by cheek swab and then return the test kit  using the postage paid container provided to you.

Receive your genetic testing results

  1. You will participate in a 30 minute post-test genetic counseling session to receive the results
  2. The session will be scheduled at a time convenient for you
  3. The purpose of this session is to review the results of the genetic testing

Visit a Pediatric Neurologist or another
appropriate specialist

  1. Based on the results of your genetic tests, the Project FIND-OUT team will work with your primary care physician to help you schedule an appointment with a Pediatric Neurologist or other relevant physician
  2. The purpose of the appointment is to discuss any findings from the genetic test, potential diagnoses, and next steps to ensure your child is getting the right care and treatment

Complete follow-up forms

  1. You will be asked to complete some online forms at 12 weeks and 12 months after your post-test genetic counseling session. These forms will take less than 30 minutes to complete. These forms will collect your feedback on Project FIND-OUT and will help us understand if the genetic testing was valuable for your child and your family.
  2. You will also be invited to participate in a telephone interview to provide feedback on Project FIND-OUT. 

How Can I Learn More About Project FIND-OUT?

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What Organizations Are Participating In Project FIND-OUT?

The Project FIND-OUT core collaborator group includes the following organizations:

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