24 Jun 2026
AMEND Endorses Call for More Information on Belzutifan
Along with other patient groups and medical societies, AMEND has endorsed a group of clinicians and researchers who have submitted a detailed letter to the medical journal, Trends in Endocrinology & Metabolism, calling for more information to be released on the clinical trial of Belzutifan.
The new cancer drug, Belzutifan, has recently shown promising results for people with advanced pheochromocytoma and paraganglioma, leading to FDA approval in the USA for patients aged 12 and over. In trials, around one in four patients saw their tumours shrink. However, researchers believe more work is needed to understand who benefits most.
Since genetics play a key role in these conditions, experts are calling on the drug’s manufacturer, Merck, to share detailed genetic data from the trial (LITESPARK-015). This could help doctors better match treatments to patients, improving outcomes and guiding future care, as well as wider approval of the drug outside of the USA.
The letter, in the form of an article in the medical journal will be posted here once available.
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