Research Study Information for Parents
Children can become involved with medical research in several ways. First,
as a patient with a medical problem. Parents may be approached by their
physician about their possible interest in being part of a medical research
study that the doctor is involved with. Participation is never required,
and choosing not to participate, by law, cannot minimize any care that
the child would have received in the first place. But, especially in
very challenging circumstances, participation in a research study where
there is no known cure for the problem the child is facing, or where
there is no clear approach for how to best provide comfort or relief,
joining an experimental approach may provide a viable option to consider.
Such participation may help not only your child, but such involvement
may also help scientists to learn new ways to treat children around the
world facing similar circumstances.
Click here for a User-Friendly Glossary to terms used in the Pediatric
GCRC.
It is difficult enough being the parent
of a child with a medical problem. We also know that understanding
how medical science learns new therapies through formal scientific methods
can be even more overwhelming. Especially where children are involved,
this challenge for parents has been studied carefully in the hope to
be able to assist parents in more easily being able to learn about the
possible benefits and personal commitments required to become part of
a research study. One of the best places we have found that provides
a wealth of information in this area is listed below.
Boston Children's Hospital, under an NIH grant, has created a wonderful
source of information specifically for parents who are considering whether
or not to enroll their children in a medical research study. The BCH
Web site includes text, videos, FAQs and reference literature that parents
should find very helpful. While these materials were created for Boston
Children's Hospital, the content is just as relevant to our research
performed here in Colorado. We invite you to review the online materials
from BCH to learn more about pediatric research, and then to call us
if you would like more information specific to one of our research studies. Click
here to view the BCH Web site.
