Frequently Asked Questions (FAQ)
For Parents
Q: How do I find out if a research study is underway or planned for the
situation my child is in?
A: Contact your doctor or specialist if they work at Children's Hospital
or the University of Colorado Hospital to see if they are involved in
such a study. Alternatively, contact our administrative offices to get
contact information for any doctors that we know doing specific research
you are interested in.
Q: Does it cost anything to be part of a research study?
A: No. Typically all services associated with the research are free including
doctors fees, hospital stays, medicines and testing. And, in some cases,
you may even receive a small payment for participating in the research
in recognition of your time and commitment.
Q: How do I know what they will do during the study?
A: Before anything can start, you will be presented with a number of
forms explaining in detail exactly what the study entails. You can
ask the doctor or nurse who will present this information to you any
questions that you may have. You must agree to participate, and sign
the forms before any activites for the study can begin. And depending
on the age of your child, they may also have the opportunity to learn
about the study they are about to become involved with. Setting their
expectations and answering their questions typically helps to remove
any concerns about what will be happening to them.
Q: What risks will my child face if they participate in a study?
A: By law we typically cannot expose a child to any risk that is greater
than they are already facing with their medical problem.
Q: Can I stop participating in the study once I've started?
A: Yes. You are free to stop participating in any research study once
you have started for any reason.
Q: Who will get to see the medical information and data generated for the
research that my child is part of?
A: Generally, data generated specifically for a research study remains
part of the study under the control of the principal investigator. If
your child becomes involved in a study while they are also a patient
within the hospital, any data associated with their normal care will
be held by the hospital, along with an indication in their medical record
that they are also a research subject. Research data may or may not become
part of the hospital records depending on where the data is generated.
Q: How can I get more information on the Pediatric GCRC? Is there information
I can download right now?
A: Look in the section on Information Resources (button on the left)
and download informational pamphlets on our research center - in Word or
PDF format; in English or Spanish.
For New Investigators
Q: How do I get started if this is my first research protocol submission?
A: The GCRC program was created with this situation in mind - to help
new or young investigators to learn research methods in a clinical
setting. Read the information available on this site, and contact our
Research Subject Advocate to discuss how you can get started.
Q: How much do GCRC services cost?
A: Generally approved protocols receive most or all GCRC services for
free. Typically direct costs and salary support are the responsibility
of the individual investigators (usually from other NIH funding).
Q: What if I'm studying a very new area where little is known?
A: The Pediatric GCRC reviews pilot studies for new areas of science.
These types of studies are typically of short duration, and involve
just a few study subjects. Although there is less formality required,
basic elements of clinical research must still be met. Good science
is the basis of research conducted in the Pediatric GCRC. Often novel
research questions, or looking into under-represented groups or rare
diseases, is an appropriate starting place for studies that we sponsor.
For Study Coordinators
Q: I'm totally new to research and don't know where to even start? Help!
A: See the section on For Study Coordinators in the About Us button on
the left of this page. Then give us a call and we'll help you to begin
learning how to best support an investigator doing research at our
Center.
