Get a 3 ringed notebook or organizer with
pockets, highlighter pens, stapler/paper clips, sticky notes.
Make a brief summary of your medical history,
especially your cancer history.
Have copies of your medical record in case you
are asked to fax information to determine trial eligibility. Always keep a copy
for yourself. You don’t need the whole record. Include: all
pathology reports, any surgical/operative reports, most recent scan reports,
tumor marker results, most recent oncologist visit note which will outline your
history as well. It is helpful if you have recent laboratory/blood test
results, but the clinical trials nurse can get this herself with your
Include name, phone number, fax number, address
of your treating oncologist or hospital so they can obtain your records if
necessary. They will ask you to sign a medical release form.
If you don’t have access to a
computer, go to your library. It is much easier to find out about trials
if you have computer access.
Start by looking up NCI/NIH
sponsored trials and then narrow your search. Go to www.cancer.gov
You can search by type
of cancer, state
in the U.S. that the
trial is being offered in, stage
of cancer, whether you are looking for
” trial or “supportive care” trial (like….nausea trials,
symptom or side effect trials).
If you are looking for trials
at a particular hospital or medical center
you can “Google” the name of
the medical center and then look for “cancer” and “research or clinical trials”
to find specific trials. Go to every hospital in your state or city if
you need to. There should always be a phone number of a nurse who you can
call and ask more questions to. Feel free to call them! Some
websites will list all trials that they offer and some will make you call them
to ask what trials they have for you. If you only have the main hospital
number, call it and ask for their “Cancer Clinical Trials Office or
Dept”. Someone will help direct you further.
For some pharmaceutical
it is a little tougher. Sometimes they are harder to find and
they won’t give you as much information. If you know the name of the drug
that you are interested in, you can “Google” that drug and it should list the
name of the drug company who makes it. Then, go to their website.
Go to the following website and double click on the particular drug company
name and it will bring you right to website of drug company. You can also
sort by type of cancer: http://www.phrma.org/newmeds/
. When in doubt of where to go next, keep entering terms in “search” “clinical
trials” or “cancer clinical trials” and then get more specific with
For any of the sites, they
will bring you to a brief synopsis about the trial and some of the eligibility
for it. This is another way to weed out the trials that are
not for you. Print these out and save them. See if you can weed out
trials based on this criteria (if it says that the trial is only for 18-35 year
olds and you are 45, don’t even bother to look at that trial further).
Call the trials nurse listed in the contact section and take notes about the
trial on that particular trial printout. Believe me, trials can go by
numbers and this can all get very confusing and it helps to have your info in
one place. Also write down if you spoke with the nurse or just left a
Ask as many questions as you
can on the phone to further weed out trials you may not be interested in.
Ask the trials nurse for more information or the consent form for informational
purposes to be sent to you if possible. You waste a lot of time if you
have to set up appointments to discuss trials further if there is something
that might make you ineligible right up front and you can find out about it on
the phone vs making a special trip in. Remember, your time is important.
A reminder, participating in
ANY clinical trial is voluntary. NEVER let someone try to force you to
participate. Also remember, even if you enroll in a clinical trial, you
can come off the trial at ANY time. If you feel pushed into a clinical
trial, something is wrong.
Some Other Useful Websites for ClinicalTrials