YGSA supports and promotes IRB approved research studies that can help cultivate information about people living with young strokes. If you have a survey or study in which you would like to enroll families, please contact us at YGSA studies.
Please see below for the survey link:
https://redcap.partners.org/redcap/surveys/?s=PT7W84Y3WH
Here is some more information about the survey to include in your post:
Researchers at the Massachusetts General Hospital Pediatric Stroke Clinic are conducting a research study, titled ACTA2 Patient Reported Outcomes Survey, which is a 15-20 minute survey that we invite you to complete. The purpose of this research project is to better understand the impact that cerebrovascular disease caused by a mutation in the ACTA2 gene has on the development and quality of life of patients and their families. We invite you and/or your child to complete this voluntary survey if you have been identified as being affected by a mutation in the ACTA2 gene. We hope to learn about which issues you struggle with the most so that physicians and researchers can advance treatments and support you throughout this journey. The information that you provide us in the survey will be kept on a password-protected computer in a locked office at Massachusetts General Hospital. By doing this, we will do our best to protect your confidential information.
