Looking for layperson’s resources on breast cancer clinical trials

June 17, 2023 3:02 PM

I’m undertaking a professional project with an organisation that funds clinical trials for breast cancer. I have a specific skill set that I’m bringing to the table, and while a deep understanding of the subject matter isn’t required, I’d like to know the basics (if there is such a thing) so I have more context. I’m looking for resources, ideally books, to start orienting myself.

The types of questions I’m hoping to answer for myself relate to the types of clinical trials out there, how they are planned and run, their different stages, and funding mechanisms.

I’d also like to know more about the experience of clinical trial participants: the motivations for participating (or not), the selection process, the costs involved to the participant (if any), the emotional and psychological aspects of participating in a trial.

I have zero medical or scientific background, so a lot of what I’ve found through a Google search and a library search isn’t at a level I can understand. Books are preferred; assume I’ve already read what comes up on Google for variations of this query.

I’m specifically interested in resources on clinical trials for breast cancer, but if none exist that are at my level I’d be very open to general information.

posted by third word on a random page to Science & Nature (4 answers total)

Wisdom Study This clinical trial is currently in progress under a principal investigator based at UC San Francisco. The trial includes genetic testing in addition to conventional cancer screenings. The Principal Investigator has also written extensively on the topic.

The Osher Mini Medical School for the Public is based at UC San Francisco as well. They have a very academic but easy to understand series of lectures on their website where faculty discuss the latest in clinical trails; you may be able to find some literature recommended embedded in the lectures for your specific areas of interest.

From your above description, I assume you have already looked at Dr. Susan Love's website and The Breast Book. If not, you may find further research directions on there.
posted by effluvia at 6:44 PM on June 17, 2023

Is the Susan Komen site at the level you need? Its "Patient and Caregivers" section has info on general info on different levels of clinical trials as well as patient stories via video. At first glance, the info sections seem of good quality, but be aware the organization itself has come under question for its fundraising and endorsement tactics.

Clinicaltrials.gov may be a good next step.

Also, your organization may have someone you can sit and talk with, either an internal clinical-type person or an experienced "first contact" person.
posted by beaning at 6:54 PM on June 17, 2023

You might find the FORCE (https://www.facingourrisk.org/), Facing Hereditary Cancer Empowered website helpful. It aims to provide information to those with genetic mutations predisposing them to breast cancer include detailed discussion of clinical trials. It's run by a very involved and knowledgeable community. Other communities for this same group might be helpful.
posted by lookoutbelow at 8:49 PM on June 17, 2023

Best answer: I work in clinical trials, including breast cancer trials. I haven't come across any good books that provide what you’re looking for; most resources at the level you're describing are on the web, likely because of how quickly things change in the space. Here are some things that seem useful, in no particular order. I haven’t read any of them myself, but skimmed the contents or syllabus to look for useful aspects.

Personalised cancer medicine: Future crafting in the genomic era is an open access book that seems to have a historical overview of precision oncology. It isn't specific to breast cancer, but is broadly applicable.

NCI’s page on breast cancer research is a great jumping off point. NCI has resources aimed at both patients and professionals.

NIH’s clinical research overview gives some good background on clinical trials.

Depending on your responsibilities, CITI program’s clinical research coordinator course may be helpful in learning more about clinical research conduct.

Coursera on Design and Conduct of Clinical Trials to learn some background on how clinical trials are run.

Coursera on the biology of cancer to provide background info on some of the terms and important areas you’ll hear about.
posted by bluloo at 10:00 PM on June 17, 2023 [2 favorites]