Apparently the National Cancer Institute (NCI) has just re-funded the Fred Hutchinson Cancer Research Center in Seattle to the tune of $24 million to continue to operate what we see as an important, patient-centric program here in the USA that we (and therefore probably many others) were utterly unaware of.
For greater detail about this program, see this media release from “the Hutch” that was issued yesterday, but here are the basics:
- Any cancer patient or caregiver can call the 1-800-4-CANCER service (that’s 1-800-422-6237) and ask very specifically about help in looking for clinical trials that may be appropriate to their or their loved one’s situation.
- The program can also be contacted by live chat (click here) or simply by e-mail (click here).
- The information specialists you will be referred to will now routinely help by searching the Clinical Trials.gov database for NCI-sponsored clinical trials and helping you to discuss these trials with your doctors.
Now this program will not necessarily help you to find about all prostate cancer trials. For example, it can’t help with early stage trials of possible new drugs being sponsored solely by biopharmaceutical companies, but many of the later stage clinical trials for such drugs are supported, at least in part, by the NCI, because they are being run by or in association with one of the major clinical trials cooperative groups.
For patients who aren’t familiar with the use of the ClinicalTrials.gov database (which can be challenging to use until you are really familiar with it), accessing this service represents a huge opportunity because it allows you to find out about possible treatment options that even your own doctor may not know about.
We have obviously known about the 1-800-4-CANCER program for a long time. Historically it helped patients to understand their conditions and to learn about questions that might be helpful to discuss with their doctors. It even helps smokers who are trying to stop the habit (because there is such a strong connection between smoking and risk for certain types of cancer). These are still a part of the range of services that can be accessed through this program. What we were not aware of was that the program had been “re-vamped” to offer a very specific set of services related to finding out about possibly appropriate clinical trials. Potentially, this is a very valuable resource for patients in the US with (particularly) high-risk, later stage, and advanced forms of prostate cancer.
Just one word of warning (to quote Nancy Gore, the director of the Contact Center):
Sometimes the answer [callers] seek doesn’t exist
and that can be one of the hardest aspects of a cancer diagnosis to deal with.
Should you choose to use this service, we’d also be interested in feedback about how well it was able to assist you.
Filed under: Drugs in development, Living with Prostate Cancer, Management, Treatment | Tagged: clinical, help, information, support, trials |
THE "NEW" PROSTATE CANCER INFOLINK 
To share with the CCTG folks
Had a chance to meet with Deborah Zarin, MD, the director of ClinicalTrials.gov website and clinical trials registration for NIH. She did a nice presentation for the patient advocates at SWOG and followed up with a plenary presentation in San Francisco last month. Interesting presentation that outlined well why we need trials to be registered and reported on. And she also went over that non-reporting physicians and institutions will face a very stiff penalty from the NIH that includes losing all funding for clinical trials and being denied registration for new trials. She also noted that soon we will see a new website for ClinicalTrials.gov that will hopefully make finding appropriate trials easier for patients. As of today there are 3,926 trials listed at the site if you search “prostate cancer”. That’s a useless search unless you have a lot of time on your hands. I am registered for the test drive of the new site format and the search engine is far more robust. Still a ways to go but finding a suitable trial will be easier.
I am currently co-writing a piece in a major urological publication on the patient perspective when left with a daunting decision to join a trial. My memory serves me well here as I had that decision to make 10 years ago. But back to the RCT discussion, patients should be well educated by the clinicians offering trials to their patients. These trials are very important for advancing care standards to patients. Patients that do participate are doing a great deed for the future of cancer care.