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.
- Look for who publishes the site. Is the publisher reliable? Is the site balanced? Focus on sites that end in .gov, .org, or .edu as a place to start. Government sites like the National Institutes of Health and health organization sites like the American Academy of Pediatrics are sites that you can trust for good information.
- Find the date when it was last updated. Is the information current?
- If it is a personal site, make sure the information is credible. Is it a blog or opinion? Does it have references?
Recommended Resources
The American Academy of Pediatrics strongly supports the value of research for improving children’s health.
HealthyChildren.org is the official American Academy of Pediatrics website for parents and is the only parenting website backed by 64,000 pediatricians. HealthyChildren.org offers general information about children’s health as well as specific guidance on parenting issues in English and Spanish. Parents can find information on their child’s ages and stages, healthy living, safety and prevention, family life, and health issues, as well as newsletters and interactive tools like the KidsDoc Symptom Checker and Ask the Pediatrician.
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.