APPENDICURE

Almost every week, someone in our group writes a version of the same sentence. They have run out of standard options, they heard there might be a clinical trial somewhere, and they cannot find one they can actually get to. Two new studies presented at the 2026 ASCO Annual Meeting help explain why appendix cancer clinical trials are so hard to reach, and why that experience is not your imagination.

One trial, one site

The first study looked at every cancer trial in the country that was built for a specific gastrointestinal cancer and was recruiting patients in early 2026. The team found 283 of these trials spread across 1,322 locations. They then asked a simple question. What share of Americans live within 30 miles of a site for their cancer type? For most common cancers, the answer was reassuring. Colorectal cancer had 82 trials at 1,026 sites, reaching about 80 percent of the population.

For appendix cancer, the picture was very different. The researchers found one trial built specifically for our disease, offered at a single location. Only about half a percent of the country lives within 30 miles of it. Put the other way, roughly 99.5 percent of the United States sits in what the authors call a trial desert for appendix cancer.

It helps to be precise about what that number means. The study counted trials built specifically for one cancer type. It did not count the broader trials that appendix cancer patients sometimes join, such as basket trials that accept several tumor types, drug trials based on a shared mutation like KRAS, or surgical studies like the SWOG trial testing the timing of surgery and heated chemotherapy. Those options exist and they matter. What is almost missing is a trial designed around appendix cancer itself.

The same study also found that rural and lower-income patients had the least access of all, no matter which cancer they had.

The newest hope is also the most concentrated

The second study mapped a different frontier. CAR T therapy reprograms a patient’s own immune cells to attack cancer. It has changed outcomes in blood cancers and is now being tested in solid tumors, including disease that spreads across the lining of the belly. The team mapped 307 CAR T trials at 356 institutions. They found that 10 major centers held more than 45 percent of all of them. About 130 million people, close to 39 percent of the country, live 30 miles or more from any active CAR T site, and the gap is widest for rural, lower-income, Hispanic, and Black patients.

This is the part where I have to be careful with myself. It is easy to read the words immune therapy and let hope outrun the evidence. CAR T for solid tumors is early and experimental, and no one should leave this post thinking CAR T treats appendix cancer today, because it does not yet. What the two studies show together is something more basic. Even when promising science arrives, the door tends to be in a small number of buildings, and most of us do not live near one.

Why appendix cancer clinical trials stay out of reach

Geography is only part of it. Three other things quietly push appendix cancer to the edge of the research map.

The first is rarity. There are not enough patients counted in any one place to justify a trial built just for us, so appendix cancer gets folded into larger groups or left off the list entirely.

The second is measurement. Many trials require tumors that can be measured on a scan, and they judge success with a rule that counts whether those tumors shrink. Appendix cancer often spreads as mucinous disease, a jelly-like spread across the lining of the belly. That kind of disease is hard to measure on a scan and does not shrink in the tidy way the rule expects. So even when a trial is technically open, its entry rules can quietly screen our patients out.

The third is grading. Most pathologists in the United States sort these tumors into three grades, called grade 1, grade 2, and grade 3. A great deal of trial design, and even some everyday treatment thinking, sorts patients into only two buckets, low-grade or high-grade. Grade 2 sits in the middle. It is treated as too active to simply watch, yet it does not fit cleanly into the high-grade trial groups either, so grade 2 patients often end up counted in neither column. No one decided to exclude them. The categories were built without a clear place for them, and that absence is its own kind of erasure.

When you stack those three problems on top of the geography, you get the experience people in our group describe so often. The disease is rare enough to be left off the list, hard to measure by the usual yardstick, and graded into a middle tier the system does not track well, and then a patient is asked to travel across the country to the one place that might help.

What these studies do and do not tell us

Both studies were presented as posters at a conference, which means they have not yet gone through full peer review, so the exact numbers may shift as the work is published. The gastrointestinal study captured a snapshot of trials recruiting in early 2026, and a snapshot like that changes over time. The CAR T study looked at all CAR T trials, most of which still treat blood cancers, so it describes the overall access map rather than appendix cancer specifically.

Geography is also just one barrier among many, since cost, insurance, time away from work, and eligibility rules all stack on top of it. The shortage of appendix cancer clinical trials is real, and so is the distance to the few that exist. None of this means there are no options. It means the options are scarce and far away, and that is a problem we can change rather than a fact we have to accept.

Why we keep building the registry

This is the reason the registry matters so much. Research teams build trials around groups of patients they can see and count. When a disease has no organized data standing behind it, it is easy to leave off the list. Our patient registry exists to change that. Every entry adds to a clearer picture of who we are, how our disease behaves, and how many of us there are. That picture is what helps bring more appendix cancer clinical trials within reach, designed with entry rules and success measures that match how this cancer truly behaves.

As Rick Page wrote in Hope Is Not a Strategy, wanting a good outcome is not the same as having a plan for one. The plan here is plain. We make ourselves impossible to overlook. If you have not added your information yet, you can do that in a few minutes through our patient registry.

Studies referenced

Thakur R, et al. Geographic accessibility of recruiting clinical trials for rare and common gastrointestinal malignancies in the United States. 2026 ASCO Annual Meeting, Abstract 1540. View abstract

Thakur R, et al. Assessment of CAR-T clinical trial availability and accessibility in the United States. 2026 ASCO Annual Meeting, Abstract 1558. View abstract