Wading through clinicaltrials.gov?

September 2, 2014 7:42 PM

I'm looking for clinical trial information for a loved one diagnosed with gliobastoma and the options on clinicaltrials. gov are somewhat baffling and numerous (all 907 of them). How do I narrow it down?

I asked the neuro-oncologist (UCSF) who is treating the patient if there were any clinical trials to look into and she basically said no. We're seeking a second opinion at City of Hope but time is of the essence. We've been told the tumor is inoperable and aggressive and that we should pursue radiation with chemotherapy (temozolomide). I know the overall prognosis is grim but we want to be sure we're exhausting all avenues.

posted by otherwordlyglow to Health & Fitness (4 answers total)

I would be calling phone numbers for anything that seems on-point.
posted by oceanjesse at 7:49 PM on September 2, 2014

Well, first thing to do might be to click the check-box by "Include only open studies." That cuts the options down to 280. Then I suppose you'd have to click through and read up on the ones that look most relevant, then make some phone calls. Good luck!
posted by fifthrider at 7:51 PM on September 2, 2014

Best answer: If you want to narrow down your clinicaltrials.gov search, first click the checkbox at the top of the list that says "Include only open studies", that narrows it down to about 280 (the studies it excludes are studies that are not taking new patients). You can also click on "Modify this search" and in the Search Terms field enter: "newly diagnosed", which narrows it down to about 67. You can scroll down on the search page and check the box for age depending on how old your loved one is. You can then also click on the "On a map" tab and click the US and then California if you wanted to stick to California.

That should help narrow down the search, but you should still scroll through as some of the trials listed are not treatment trials (they're quality of life or imaging trials). Click on the title, which will take you to the full listing, then scroll down to "Contacts and Locations" and there should be at least one name and phone number which you can call to find out more information. You can discuss with a person at the study site whether your loved one would be eligible for the trial (for example, there may be rules about what stage of disease your loved one must have to enroll on the trial) and how you can arrange to be seen at the site.

I think radiation with temozolomide is the standard treatment, and usually doctors like to treat with the standard first, and then move on to other therapies if the standard doesn't work. You should ask the neuro-oncologist what your loved one's options are if the radiation and chemo don't work, and how you all will know when it's not working and need to move on to other things.

Also I have to throw in that Stanford is pretty close as well, and there are a few studies that might be of interest to you (the webpage goes to the list of studies, if you click on a study there is a contact number on the right hand side of the page): http://cancer.stanford.edu/trials/list.html#serviceLineId=cancer&condition=Gliomas&recruitingStatus=RECRUITING
(Disclosure: I work at Stanford, in the Cancer Clinical Trials Office. I don't know which of any of these trials your loved one might be eligible for, or wish to volunteer for.)

All the best to you and your loved ones.
posted by sarahnade at 8:08 PM on September 2, 2014 [10 favorites]

For cancer, I think that the search engine on cancer.gov

http://www.cancer.gov/clinicaltrials/search

is better than the general clinicaltrials.gov registry.

However, please don't go into a clinical trial expecting a miracle cure. Let's put it this way: for a disease like glioblastoma, extending a patient's life by a few weeks is a rare and notable success.

Best of luck.
posted by cgs06 at 5:13 AM on September 3, 2014