Researchers and families talk about ways to make sure they have reliable information to understand clinical studies.
How to Find Reliable Information
Information is knowledge. And knowledge is power.
Getting educated about your child's condition and how studies work is often the first step toward making a decision.
There are lots of resources out there to help you get the facts you need to make a good decision; valuable sources of information include the Internet, families with similar concerns, medical experts, support groups, patient advocates, friends, and family members.
The Internet is a powerful tool, but use it wisely. You want to be sure the information you're getting is trustworthy and true.
Remember, you're not alone.
There are people out there who can help too. You can ask your own physician or a friend of the family who may have more knowledge about the condition.
You can even ask the study team to put you in touch with other families who have faced the same decision. Connecting with families who have dealt with the same disease or who have been in a study can often help you.
And ask questions of your medical team—your primary care doctor, nurse, specialist or others involved in your child's care
"Parents should research it first, go on the Internet, do a lot of research, weigh out the pros and the cons and then pick and see if the pros outweigh the cons"
"Many large studies have a study coordinator who's usually a nurse. People often find that it's easier to approach a nurse than a physician."
"I will ask the question first, 'Who is your primary care pediatrician' and get that individual involved. This is hopefully someone who can provide both information to the [study] practitioner but also provide some level of comfort for the family as information is being given to them."