Findings & Breakthroughs

Out of thousands of compounds tested, one binds brachyury (TBXT) strongly enough to cross the challenge threshold, confirmed in 3+ repeat tests (Sep 11, 2026). Brachyury is in every chordoma, is essential for tumor survival, and is absent from normal tissue, but it has been considered 'undruggable'. More prizes remain, including a tougher second threshold.

The consensus update for primary localized chordoma is now published, written by 150+ experts from 90 institutions in 20+ countries. The patient version is on the Chordoma Foundation site.

The CF lab found that second-generation CDK7 and CDK9 inhibitors don't lower brachyury, while blocking CDK12/13 does, killing cells in 5 models. The Foundation is in talks with a company that has CDK12/13 inhibitors about a possible future trial.

Brachyury pieces shown on the tumor surface can be targeted with vaccines, antibodies, and T-cell approaches. The new Mark Foundation for Cancer Research partnership funds grants in 2027.

One trial design will test several drugs. Arms start at about 12 patients and grow to about 30 with a signal. Pooled data from 12 past trials serves as the comparison group, so fewer patients are randomized. It opens first at about 4-6 US sites.

Most patients at leading centers now get gross total resection. At 10-15 years, tumors return much later after total removal than after partial removal, and near-total removal isn't as good. The old '7-year median survival' figure is outdated.

In a Mayo series, about half of patients with recurrence were alive at 5 years. Those who could have surgery plus radiation for the recurrence had a median survival of about 10 years.

About 15% of patients get substantial shrinkage, sometimes lasting more than 2 years. It helps, but it isn't enough.

It can reveal off-label drug options. Targeted panels cover 200-400 genes. Whole-genome sequencing currently gives more data than is useful.

MSK's experience over several decades shows radiation alone being used more and more. Carbon-ion and proton results support it. The decision depends on whether a surgery's side effects are acceptable.

Doctors use tumor pathology after surgery to decide who needs radiation and who can be watched.

Freezes tumor tissue with argon and helium cycles. It's done by interventional radiology and decided by a multidisciplinary tumor board.

Dense tumor matrix and high internal pressure keep immune cells out. One idea under study is softening the tumor with enzymes first.

Only 12% would join a placebo-controlled trial. That rises to 45% with crossover and 59% with an active comparison drug. 84% would join a trial that could shrink the tumor.

The program is well funded. Only about a quarter of patients knew about it, and 80% said it would make them more likely to join a trial.

Representatives attended and were described as open to a workable approval path. No chordoma drug has ever been approved, so there's no precedent to follow.

A worldwide expert panel will review pediatric cases held at morning and late-night times. Poorly differentiated chordoma is more common in children.

Two patients with cervical chordoma fainted after massage (carotid sinus syndrome). Tell body-work providers your treatment history.

Add a physiatrist, PT/OT, supportive care early, nurses, and pain specialists. The new guidelines include rehab.

Case managers help with insurance and money problems. The doctor directory was also redesigned to show more about each doctor.

Chordoma doesn't have its own billing code, which makes it hard to find chordoma patients in large health-record databases. The Foundation is building its own registry.

9,705 of 10,000+ unique donors made their first gift through a peer fundraiser. A typical fundraiser brings in about 12 new households.

Genetics play a role, but no environmental cause is known. Routine family screening isn't generally done.