While The Kelly Heinz-Grundner Brain Tumor Foundation (KHG) is primarily focused on brain tumor awareness and education with a goal of early detection, it also understands the importance of clinical research. Specifically, KHG knows that research is the long-term key to success. The truth is that there will never be a cure without research.
Sadly, there just isn’t enough funding to support all of the promising advances being made everyday by the many world-class institutions (hospitals, medical schools, etc.). What’s more, patient participation in clinical trials is also insufficient, potentially resulting in severe delays in the availability of new treatments.
KHG would like to help resolve this problem by providing this dedicated clinical trials webpage. Here readers can learn more about the “ins and outs” of clinical trials and also access online information regarding the “latest and greatest” clinical trials for brain tumors.
What are clinical trials?
New treatments and therapies for treating diseases are discovered
in the laboratory by “basic” scientists. Our understanding
of potential promising therapies is refined in extensive pre-clinical
tests. Before being made generally available to patients on the
open-market as prescription medication or treatments they are tested
in clinical trials. A clinical trial (also called medical research,
clinical research or a clinical study) is a research study designed
by scientists and medical experts who invite people to participate
by testing the new therapy or treatment to help answer questions
about the potential new treatment. The purpose of a clinical trial
is to test the safety and efficacy of new treatments. Clinical
trials are an essential and necessary component of the scientific
research process. Put simply, without clinical trials no new medications
or treatments will become available.
Clinical trials conducted in the U.S. are regulated by the U.S. Food and Drug Administration (FDA), and overseen on multiple levels by medical experts and committees comprised of physicians, scientists, and patient and community representatives whose role is to protect patients from unnecessary risk. Clinical trials are conducted and carefully monitored in a series of phases. Each phase being refined to test the safety, tolerability, and effectiveness of the potential treatment.
Why do brain tumor clinical research studies need volunteers?
Over the past decade, the National Institutes of Health (NIH) have
devoted significant federal dollars to making substantial scientific
discoveries and advances in the neurosciences. This investment
has resulted in a recent explosion of new research insights about
diseases of the brain, including brain tumors.
However, a potential crisis in brain tumor clinical research is looming: the number of people volunteering to participate in brain tumor clinical trials is not keeping up with the growth in available trials. This means that some trials are being unnecessarily delayed because of difficulties in finding patients who are willing to participate.
That’s why brain tumor advocacy groups have decided to initiate a community-wide effort to educate and inform people with brain tumors, their families and caregivers about clinical trials, and to increase the number of people with brain tumors who are willing to learn about the studies and consider participation. The goal of the campaign is to bring scientists, medical researchers and study participants together to help make new treatments available, more quickly, to the people who need them.
What questions should I consider before joining a clinical trial?
Before participating in a clinical trial, you should confer with
to your neuro-oncologist, family and friends. Make a list of any
questions or concerns that develop in these conversations, and
take these to the study coordinator to get an answer before you
sign-up. Below is a list of suggested questions that will help
you understand more about the trial you are considering:
How do I find out about available clinical trials?
Researching clinical trials can be quite challenging. Finding the
right clinical trial for you requires even more time and more patience.
With that said, the following list provides some good places to
start. Of course, you should also ask your neuro-oncologist about
the trials that he or she may know about, as well. In addition,
you can also contact major research centers in your area, such
as hospitals, universities and clinical research centers.
www.virtualtrials.org
This website is dedicated to brain tumor clinical trials and lists
trials presently seeking patients. You can search by trial type
or location and review each trial's eligibility criteria. You can
also sign up to receive regular updates in print or e-mail bulletins
about future trials.
www.emergingmed.com
Since December 2000, EmergingMed has guided more than 115,000 patients
through a search for cancer clinical trials. EmergingMed’s Navigator
service enables you to create a detailed profile to see if you
match the eligibility requirements of more than 10,000 trials in
the United States and Canada.
www.cancer.gov/clinicaltrials
Here you'll find information about federal and industry-sponsored
clinical trials. In addition, you'll find a useful glossary of
clinical research terms, clinical trial results and other trial-related
educational materials. This information can also be accessed through
the NCI’s Information Service Center by calling 1-800-4-CANCER.
Note: The information on this webpage is provided "as is" for general information only. KHG does not offer medical advice or recommendations and individuals should not rely on the information posted this page as a substitute for consultations with qualified health care professionals who are familiar with individual medical conditions and needs. KHG strongly recommends that care and treatment decisions related to brain tumors and any other medical condition be made in consultation with a patient's physician or other qualified health care professionals who are familiar with the individual's specific health situation.
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