Understanding Hearts: A Study on Communicating Neurogenetic Conditions to Siblings

Genetic counselor Abby Turnwald and colleagues created a research study to learn how parents communicate neurogenetic diagnoses to their unaffected children (siblings).

They are looking for parents with a child with a neurogenetic condition and at least one child without the condition aged 7-17 years to participate.

The parent will take a short survey followed by a survey for the sibling. They hope to use this data to create more resources for siblings!

To participate, fill out survey here: https://redcap.link/r82457y1