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 permission.
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 or www.clinicaltrials.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 a “treatment” 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.
Try a clinical trials search engine or matching service (do not pay any money for this service) like: http://news.cancerconnect.com/clinical-trial-information or http://www.cancertrialshelp.org or http://www.centerwatch.com or ACS www.cancer.org There are many of them. Some are better than others.
For some pharmaceutical trials 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/ and http://www.phrma.org/research/clinical-research-trials . 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 each search.
For any of the sites, they will bring you to a brief synopsis about the trial and some of the eligibility criteria 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 message.
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.
Good luck searching!!!
Some Other Useful Websites for ClinicalTrials:
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