Finding Clinical Trials: A Patient’s Guide

During the 2025 San Antonio Breast Cancer Symposium (SABCS), I had the privilege of participating a panel discussion that was a collaboration between the Alamo Breast Cancer Foundation, the Metastatic Breast Cancer Alliance (MBCA), the American Association of Clinical Research (AACR) and the Advanced Breast Cancer Global Alliance (ABCGA). Dr Fatima Cordoso and Teri Pollastro were the moderators, Dr. Mariana Chavez MacGregor from MD Anderson was the keynote speaker, and in addition to myself, Kirstin Spencer from METUPUK was a panelist. The title of our discussion was, in part, Demystifying Clinical Trials.

This post is the first of two since I also spoke about important parts of informed consent documents that every patient needs to think about. I’ve not been able to locate the full recording online of the panel, but will keep an eye out for it. I do have some snippets from our discussion that are particularly important to me. First up, how to find clinical trials:

Here’s a little more about what I’ve done to find and enroll in clinical trials that I was able to share in the few minutes I had to speak:

1. Affirmatively telling your various teams that you are open to enrolling in clinical trials. Even if you don’t want to bring specific clinical trials to your doctor’s attention, just reminding your doctor that you want to participate is something everyone can do. And it is especially important for people who aren’t always represented in clinical trials to affirmatively talk about their interest;
2. I’ve established care (by getting strategic second opinions) at the NCI designated cancer centers around me and where there are people doing the research on things that are important to me. By doing this, your information and your data are in the databases where researchers often search and I want to be part of that search if there is something that I uniquely qualify for;
3. For each of my portals, there’s a place in the portals where you can check a box that you are interested in being contacted (and I get contacted about once a month from one of the places). Reminder here that clinical trials aren’t always in oncology, but I’ve often been able to participate in research that crosses disciplines;
4. I set up google alerts for key words and when there’s a press release, I can see which sponsor is working on items of interest to me — this isn’t going to be helpful when it comes to some trials, such as those initiated by researchers and funded outside of pharmaceutical companies, but it’s been helpful to include in my ongoing goals to keep abreast of research for me and others;
5. I’ve found the researchers who are “thought leaders” about various things and stalked them a little (LinkedIn is good for this). Thought leaders are those people who are focused on a particular area of research and often serve as a principal investigator (PI). Many of these researchers are incredibly generous to share what they are working on via social media or when a paper has been published and I take note from their communication where I can watch for clinical trials that are likely to include people like me;
6. I’ve joined organizations like FORCE, for those of us with hereditary cancer, who are contacted by researchers interested in specific things. Whatever is unique about the cancer in your body or the cancer in your family, find the organization who is focused on that thing; and
7. GRASP is an organization that brings together researchers, clinicians and patients for tri-directional discussions after major cancer conferences — and yes, I do realize it’s bi-directional, I just find that researchers and clinicians often speak differently. I would urge anyone who is interested in clinical research sign up for a free membership with GRASP.

I’ve signed up for and participated in several different clinical trial finders that seemed very helpful at the outset. In practice, I haven’t found them to be as helpful as I’d hoped. If you are a patient reading this post and want to comment with information, I’d be happy to know how a finder has helped you.

And stay tuned for Part II!