Neuroendocrine Tumours

Rare neoplasms arising from the diffuse neuroendocrine system, with incidence rising 3.7-fold over 23 years in England. Symptoms mimic IBS and IBD, generating a median diagnostic delay of approximately 54 months.

About Neuroendocrine Tumours

In numbers

UK incidence: 8.61 per 100,000/year (2018); approximately 4,800 new cases annually in England; 23-year prevalent pool estimated at approximately 27,000 patients.
USA: approximately 170,000 prevalent cases; approximately 12,000 new cases annually. Incidence has risen substantially with improved imaging and awareness.
NETs are the second most common GI malignancy by prevalence in the USA, after colorectal cancer.

Special details

GI-NETs (small intestinal, appendiceal, rectal) predominate globally; bronchopulmonary NETs are the most common non-GI site.
Small intestinal NETs carry the longest UK diagnostic delay (~58 months); rectal NETs are typically detected earlier via incidental colonoscopy.
Pancreatic NETs (PNETs) carry worse prognosis; 60–90% are non-functional at diagnosis, contributing to late-stage detection.

Signs and symptoms of Neuroendocrine Tumours

Median symptom-to-diagnosis delay is 53.8 months in the UK and up to 5–7 years in the USA. Eighty per cent of UK NET patients visited their GP a median of 11 times before receiving the correct diagnosis.

Intermittent abdominal pain and cramping in ~30–40% of GI-NETs

Routinely coded as IBS and treated for years before NET investigation.

Episodic cutaneous flushing in ~20–30% of functional metastatic small intestinal NETs

Often attributed to menopause or anxiety.

Secretory diarrhoea, watery, up to 10 stools daily

A hallmark of carcinoid syndrome in metastatic functional NETs, mimicking IBD and other GI conditions.

Incidental discovery on imaging

Incidental discovery on imaging for unrelated indications accounts for ~30–40% of GI-NET diagnoses, reflecting indolent growth and the diagnostic gap.

Weight loss and fatigue

Non-specific symptoms leading to endocrine, haematological, and GI workup before NET diagnosis.

Key challenges from product development to launch

Strategy and Business

The wrong disease or indication selected for investment
Indications tackled in the wrong order due to shaky success estimates
R&D returns slipping below the cost of capital

Clinical Development

Trials delayed by low patient recruitment
High screen-failure rates that raise trial cost
Mixed cohorts that make the signals difficult to detect

HEOR, Access & Value

A value case that arrives too late or is underdeveloped
Eligible population under-counted, budget-impact case unsubstantiated
Approved by the regulator, delayed at HTA

Medical Affairs

Fragmented, differently-coded healthcare data
Diagnostic delay that is long and unequal
No shared evidence base across functions

Launch and Commercial

Launch planned without a view of the number of findable patients
Targeting too broad a population slows early uptake
RWE started too late to build the case

How Volv Global Helps

Strategy and Business

Pipeline mistakes compound from the earliest decisions: wrong indication, indications tackled in the wrong order, capital deployed where returns already trail the cost of capital.

inTrigue

Finds the true reachable population per candidate, so indication choices rest on evidence.

volv.global/finding-patients

inFlow

Adds probability-of-success and outcome evidence to help prioritise the pipeline.

volv.global/predict-patient-outcomes

Clinical Development

When patients cannot be found, recruitment stalls and the burn rate climbs. High screen failure rates add to the drain, and a mixed cohort makes the results harder to interpret.

inTrigue

Finds the undiagnosed and mis-coded patients conventional feasibility misses, widening the recruitable pool.

volv.global/finding-patients

inCare

Surfaces diagnosed-but-hidden, trial-eligible patients already in the data, so sites enrol faster.

volv.global/stratifying-patient-cohorts

inFlow

Predicts who will progress or respond, enriching the cohort so the signal is not diluted.

volv.global/predict-patient-outcomes

HEOR, Access & Value

Thin or late evidence lets payers restrict access or cut the price. A poorly sized population exposes the budget case, and HTA demands more than the regulator.

inFlow

Generates the real-world evidence and outcomes payers ask for, ahead of the submission deadline.

volv.global/predict-patient-outcomes

inTrigue

Finds the undiagnosed patients missing from the count, so the eligible population holds up under scrutiny.

volv.global/finding-patients

inCare

Surfaces the diagnosed-but-eligible patients who expand the eligible population count.

volv.global/stratifying-patient-cohorts

Medical Affairs

Fragmented data must be built market by market, slowing decisions. Time to correct diagnosis varies by who the patient is and where they receive care.

inTrigue

Works across fragmented, differently-coded data by design, so insight holds up country to country without a rebuild.

volv.global/finding-patients

inAdvance

Detects patients ahead of typical diagnosis, closing the gap in awareness and pathway that drives unequal delay.

volv.global/earlier-detection

Launch and Commercial

A launch without a view of findable patients is poorly resourced from day one. Targeting too broad a population slows early uptake, and late real-world evidence means the access dossier goes in rushed.