Information for Families

Sophie's Science Project Animated Video

The Harvard Catalyst Regulatory Foundations, Ethics, and Law Program has created an animated video from our comic book “Sophie’s Science Project.” The video can be found here

The comic book, Sophie’s Science Project: What is Medical Research? was developed by Boston Children’s Hospital, Cincinnati Children’s Hospital Medical Center, and the Children’s Hospital of Philadelphia with the goal of educating children about medical research. Our second comic book, BioBank: Questions and Answers, developed by Boston Children’s Hospital and Harvard Catalyst, was recently released to explain in simple terms how biobanks work, how and why samples and information are collected, and how these are used and shared.  Both comics can be downloaded below and paper copies of each may be obtained by contacting the IRB Office.

 

BioBank: Questions and Answers

The purpose of this comic book is to explain in simple terms how biobanks work, how and why samples and information are collected, and how these are used and shared.

Biobank comic book cover

Download Here

Sophie’s Science Project: What is Medical Research?

This comic book was developed with the goal of educating children about medical research. Please feel free to download this comic book and share it with children.

Sophie's comic book cover

Download Here

Comic book survey

Boston Children’s Hospital values input from our patients and the general community on their attitudes towards clinical research and how best to communicate about general research topics. We have developed two comic books to help educate families and the public about research and provide information that may be helpful in deciding whether to participate in a research study. We welcome your feedback about the comic books and any ideas for additional educational materials.

Please consider taking this five-minute survey after reading the comic book.

National Institutes of Health website for parents on medical research studies for children

The purpose of the website is to provide information for families that includes the following topics:

  • Why is research important, how is it different, safety and protections, are there benefits, your right to say no

  • Information on the research team, what you might need to ask, and what role kids play in participating

  • Information on how studies affect the family and what kids think, what happens if you leave a study or what happens when it ends

  • Know what rights you have, where to find information, and terms that you may hear in a study

  • http://www.nhlbi.nih.gov/childrenandclinicalstudies/index.php

Children's Hospital Clinical Research Bill of Rights

Children's Hospital is committed to respecting and protecting the rights of its patients and families. We strive to provide care that is sensitive to cultural, racial, religious and other differences. This bill of rights provides information about our commitment to you, and your responsibilities as a member of your child's health care team.

Feedback from participants

We welcome your feedback and suggestions whether you have had a good experience with research or would like to see some improvements. Click below to send us an email. Your submission will remain anonymous.