Major unmet needs in awareness for NETs

Awareness of NET specialists

Did you know that 27% of NET patients have never heard of or are uncertain about NET specialists?

More awareness on what is available globally in terms of neuroendocrine tumor (NET) healthcare is needed in order to improve availability of diagnostic options, treatments and supportive services everywhere.

Survey of Challenges in Access to Diagnostics and Treatment for NET Patients (SCAN) data

The responses given by 2359 patients and 436 healthcare professionals in SCAN clearly show that:

  • There is insufficient awareness globally among both patients and healthcare professionals of the most common diagnostic options for neuroendocrine tumors. Approximately 20% of all patients are not aware of common diagnostic tools such as biopsy and CT scan, while every third patient is unaware of MRI and Gallium 68 DOTA PET.
  • Awareness of more advanced treatment tools such as PRRT is limited even among healthcare professionals, 23% of whom have never heard of it.
  • There is poor support services utilization globally:
    • It is troubling that 47% of the NET patients did not see a NET specialist within the last 12 months, and over the same period, about two-thirds did not see a multidisciplinary team;
    • Around a third of NET patients are consulted by multidisciplinary teams
    • Only 12% of patients use psychological support

Healthcare & support services utilization

Knowing what is available somewhere in the world but missing in a certain country will empower citizens, policy makers, healthcare institutions, patients and patient advocates to request improvements in the healthcare system for NET patients from their governments.

Awareness brings visibility to patient needs. Everyone can help with spreading awareness. Visuals depicting major unmet needs in awareness of diagnostic options, treatments and supportive services for NETs are available below in 10 languages. Please use them and share our message.


Awareness Needed Infographic in 10 Languages