Aman Chauhan, Associate Professor at the University of California, San Francisco, shared on LinkedIn:
“Proud to share the VOICE study, presented at ESMO2026 and NANETS2026: one of the largest efforts to date to understand the journey of people living with extrapulmonary neuroendocrine carcinoma (epNEC), told in their own words.
We surveyed 226 EP-NEC patients across the US. What they told us:
- Diagnosis takes too long. 54% waited more than a month after symptoms began before seeing a provider, and pain and fatigue were the most common early symptoms.
- The burden is real. Physical and mental health scores fell below population norms, with an average 60% impairment in daily activities and 63% work impairment among employed patients.
- Precision medicine is seeing an uptake. 66% had biomarker testing, 94% were willing to undergo it to guide treatment.
- Access matters. More than 65% traveled 30+ minutes each way for care, and 23% had care delayed by transportation.
- Top unmet needs: access to specialists and novel therapies, a greater role in decision-making, and better educational resources.
This work was truly a team effort, in partnership with Dr. Jason Starr (Mayo Clinic), some of the largest NET/NEC patient advocacy organizations in US: Minkhaz NETs Mission, Healing NETs, NCAN, NETRF and the Neuroendocrine Cancer Foundation and our industry partner, Boehringer Ingelheim.
It was a lot of fun to work closely with patients, advocates, and academic colleagues on such a unique project. Thank you to every patient and care partner who shared their story. Your voices will shape how we diagnose, treat, and support people with NEC.
Stay tuned for what we learned from Medical Oncologist and Care Providers”
You can also read:
Aman Chauhan: Obrixtamig Shows Promising Response Rates in Extrapulmonary Neuroendocrine Carcinoma