| Obstacles to Participation |
| Ethics & Issues | Terminology
Links & Resources: Basics | Expanded
Access | Patient Rights | Travel
If we do not
increase participation in clinical trials, we can't hope to make
progress in treating lymphomas. Seeking clinical trials might be particularly relevant to patients with
incurable forms of lymphoma. However, it is a challenge to identify
which clinical trial is in your best interest, and
how to proceed.
"Previous research by UC Davis Cancer
Center investigators, published in the March 13, 2001 issue of the
Journal of Clinical Oncology, found that both doctors and patients
sometimes hold misconceptions that can discourage enrollment in
In that study, more than a third of the doctors
declined to refer patients to clinical trials, mistakenly
believing that no trials were available or that their patients
were too sick to be accepted. In reality, more than 150 clinical
trials were available during the study period.
Moreover, a third of the patients who were
considered for clinical trial participation declined to
participate, many of them out of a mistaken belief that
investigational treatments are not as effective as standard
In fact, many investigational treatments are at least
as effective as conventional therapy, and cancer patients who
participate in clinical trials frequently have higher survival
rates than those who receive standard care. ~ UC
Davis Cancer Center
1. Start by educating
yourself about the disease: Find reputable sources of information on the
Internet, and learn about standard and emerging treatments. Make
contacts and join reputable support
groups. Discuss what you are considering with others in
your situation who may have direct experiences.
2. Ask questions of your
treating physician ... (but don't stop there!) You should *not* feel
disloyal about seeking clinical trial information, and you don't
need your doctor's permission to do so.
For example: What investigational
treatments have the potential to:
Also see: Clinical Trials: Questions to Ask Your
3. Obtain references to lymphoma experts
with whom you can consult in your area.
The Doctors section of this website
contains help with this. It's important to seek consult with experts
in the field who will not treat you. This helps to eliminate
conscious or unconscious bias -- an investigator may want to fill a
particular trial, for example.
4. Call the National Cancer
Institute's Cancer Information Service at 1-800-4-CANCER
(1-800-422-6237); TTY at 1-800-332-8615. The call is free and a
trained information specialist is available to answer your
Resources on Toxicity and Reporting Adverse Events
"In CTCAE, Grade refers to the
severity of adverse events. Generally,
Grade 1events are mild;
Grade 2 are moderate;
Grade 3 are severe;
Grade 4 are life-threatening or disabling;
Grade 5 is death.
CTCAE grading is by definition a 5- point scale generally
corresponding to mild, moderate, severe, life-threatening and death.
This grading system inherently places a value on the importance of
places a value on the importance of an event, although, there is not
necessarily "proportionality" among grades (a
"2" is not necessarily twice as bad as a "1").
Some adverse events are difficult to "fit" into this 5
point schema, but altering the general guidelines of severity
scaling would render the system useless for comparing results
between trials, an important purpose of the system. Some AES do not
have a value for every Grade (e.g., Grade 4 hiccups is blank).