Newsletter Signup Contact Donate

Courageous Parents Network

About

Initiatives

Contact Donate Newsletter Signup

Search entire library or by microsite

Media Library

Navigating Medical Complexity Coping With Loss Neurojourney

Search

Search entire library or by microsite

Media Library Navigating Medical Complexity Coping With Loss

Click here for NeuroJourney resources

Home > Families > Megan

SHARE

Video Collection

SHARE

Megan

Megan, Executive Director Sanfilippo Children’s Foundation. Mother to Isla (10) and Jude (8), Sanfilippo Syndrome

Clinical Trials: You give up some control when your child is a data point.

Clinical Trials: You give up some control when your child is a data point.

In this video, a mother talks about how when your child is in a clinical trial much of the information or data collected is not shared with the parents and how difficult it is to look at the reports the trial sponsor posts and wonder which data point represents your child.

SHARE

1 / 14