Call this "A Question of Answers - Neuroendocrine Tumours"

To put it simply, GRG Health is in the business of finding answers (besides trends and solutions).


Yet, along the way, some of our projects produce more questions than answers, making us go further than the project scope to deliver on our client commitments.


For example, we recently closed a niche engagement covering Gastro enteroparetic Neuroendocrine Tumours (GEP NETs) - that's a rather long name for a rare disease area where the patients are often left groping in the dark because the indication is well, rare.


What we found particularly disturbing was that while the condition is poorly diagnosed to start with, the true disease burden is unknown - mostly based on assumption & extrapolation.





That's when our questions (such as the ones below) emerged in full force:


Q1. If it takes, on average, between 6 - 9 years for a diagnosis, what chance does it leave the patient with? After all, the longer it takes to be identified, the lesser the likelihood of survival (5 Year Survival, we are told by experts we interviewed with, ranges from 94% - 23%, depending on stage and diagnosis)


Q2. If the above-stated is a known shortcoming, what is being done to address it?


Q3. Not so long ago, a few landmark activities and developments (incl. M&A) occurred in this space. How does that help the third world where most diseases are showing a slow but steady climb in numbers?


Q4. 1 out of 3 respondents in the KOL pool that we spoke with claimed that even in the medical community, there was a clear need for more awareness and knowledge especially around symptoms and pharmacological treatment - commonly used drugs often lead to treatment-related side effects that adversely affect patient compliance (!)


Q5. While the tumor can be aggressive or indolent, key factors (such as the notorious and dreaded RET fusion) can worsen the outlook despite available options (incl. one that drove a major acquisition not so long ago).....


Thankfully, GRG Health also found credible (potential) solutions through targeted probing (pooled registries? active patient engagement forum?)


We also identified upcoming drugs and their value proposition besides what our top respondents (oncology and neuroendocrinology KOLs) are hoping to see and hear from the companies bringing these solutions to the patient.


Final question: what can governments and the insurance sector do here?


We found all the answers and felt like we did our bit by letting the client know - so the client can respond better to a disease that hides in plain sight!!!


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