Pipeline and open problemsNeuroendocrine tumours

12 medicines on record are linked to one of the types below rather than to Neuroendocrine tumours itself. Grouped by the type that holds them; each list opens that type's own page.

• Neuroendocrine carcinoma (high grade) behaves like SCLC.

• Sequencing of PRRT vs targeted therapy.

• Sequencing is unproven: no randomised trial orders SSA, PRRT, everolimus, cabozantinib and chemotherapy.

  What is being done about this

  Rare cancers and small trials

  and how the field plans to fix it →

  Available now

  • MIBG imaging and 131I-MIBG therapyEstablished
  • StreptozocinEstablished

  In trials

  • DART (SWOG S1609): nivolumab plus ipilimumab in rare tumoursActive
  • SPINETMixed

  Ideas and roadmaps

  • A funded expert second opinion for every new high-stakes or rare cancer diagnosis
  • A same-week expert second opinion for every rare cancer diagnosis
  • An open model bank for the rare tumours nobody has models for
  • Mandatory national virtual tumour boards for rare and complex cancers
  • One global rare cancer network with n-of-1 and Bayesian trial frameworks
  • One standing umbrella trial for all rare cancers in a country

  Also on OnCo: Find a trial · Expert centres.

• SSTR-negative, FDG-avid and high-grade disease has few options; neuroendocrine carcinoma outcomes remain poor.

• Therapy-related MDS/AML (~2-3%) and renal toxicity after PRRT; long-term data on retreatment are thin.

  What is being done about this

  Side effects and quality of life

  and how the field plans to fix it →

  Available now

  • Robotic & minimally invasive surgeryStandard of care

  In trials

  Nothing recorded yet.

  Ideas and roadmaps

  Nothing recorded yet.

  Also on OnCo: Side effects by symptom · Checkpoint side effects by organ · Side effect rates across a drug class · Survivorship planner.

• Overall survival benefits are hard to demonstrate because patients live for years and cross over.

• Isotope supply (177Lu, 212Pb, 225Ac) and nuclear-medicine capacity limit access outside major centres.

  What is being done about this

  Cost and access

  and how the field plans to fix it →

  Available now

  • Radiopharmaceutical GMP and releasing a drug that decaysStandard of care

  In trials

  • Actinium-225 supply: thorium stocks, accelerators and radium targetsPhase 3

  Ideas and roadmaps

  • Radiopharmaceutical roadmap: iodine → lutetium → actinium

  Also on OnCo: Financial help · Coverage by country · Funding verdicts by country.

• Chromogranin A is an unreliable marker; better blood tests (NETest, ctDNA) are not validated for decisions.

• Rare syndromic and paediatric NETs lack trials; hereditary carriers need lifelong surveillance protocols.

  What is being done about this

  Rare cancers and small trials

  and how the field plans to fix it →

  Available now

  • MIBG imaging and 131I-MIBG therapyEstablished
  • StreptozocinEstablished

  In trials

  • DART (SWOG S1609): nivolumab plus ipilimumab in rare tumoursActive
  • SPINETMixed

  Ideas and roadmaps

  • A funded expert second opinion for every new high-stakes or rare cancer diagnosis
  • A same-week expert second opinion for every rare cancer diagnosis
  • An open model bank for the rare tumours nobody has models for
  • Mandatory national virtual tumour boards for rare and complex cancers
  • One global rare cancer network with n-of-1 and Bayesian trial frameworks
  • One standing umbrella trial for all rare cancers in a country

  Also on OnCo: Find a trial · Expert centres.