Almost half of those diagnosed with neuroendocrine tumours (NETs) in 2020 reached severe or terminal stages
In line with World NET (neuroendocrine tumour) Cancer Day on 10th November 2021, new research conducted by Ipsen highlights the current challenges facing patients suffering from NETs across Ireland. According to the data, many patients are encountering complicated paths to diagnosis, with 60% requiring several referrals before they are eventually diagnosed with NET cancer.2 Furthermore, nearly one quarter (23%) of NET patients have waited more than five years to have their condition properly diagnosed, and almost one in five (18%) waited 1-5 years for an accurate diagnosis.(2)
Biopharmaceutical company Ipsen has launched this new research to support better awareness of this uncommon cancer across Ireland. The need to improve national understanding of NETs is hugely important given that over 90% of NETs patients had never heard of the condition before being diagnosed themselves – and worryingly, almost half (41%) of those diagnosed with NET cancer in Ireland last year had already progressed to stage IV NETs.(1,2)
There are currently approximately 2,400 patients living with a neuroendocrine tumour in Ireland, and it is estimated that approximately 140 patients are newly diagnosed across the country every year.3 According to those suffering with NETs, urgent action needs to be taken to support improved care for the NET patient community including: (2)
- Improving NETs understanding within the medical community to advance patients’ quality of care according to 37% of patients
- Developing better access to a centre of excellence with NET specialists, and more efficient diagnosis according to 20%
- Availability of more innovative treatments and clinical trials in the future to advance quality of care according to 13%
What are NETs or neuroendocrine tumours?
NETs is the collective term for a group of uncommon or ‘quiet’ cancers which are often slow to develop in the body, with symptoms that arise over time and are often attributed to more common medical problems including – irritable bowel syndrome (IBS), Crohn’s disease, peptic ulcer disease or gastritis.4 Due to the non-specific nature of the symptoms, misdiagnosis is common for patients – indeed 39% of NETs patients in Ireland last year were initially misdiagnosed at least once with other conditions. (1)
Unfortunately, the cause of NETs is not fully understood, but as with all forms of cancer, NETs arise when cells multiply rapidly in the body and result in tumour growth. Consequently, early diagnosis is a key tool for disease intervention and patient recovery. (4)
- Bouvier C, et al. Poster presented at the 18th UKI NETS virtual annual conference, 30 November–3 December 2020
- Ipsen Data on File ALL-GB-000677
- National Cancer Registry Ireland. Cancer Trends. Available at: https://www.ncri.ie/sites/ncri/files/pubs/CancerTrendsNo.18-NeuroendocrineCancers.pdf Last accessed: November 2021
- NET Patient Network. NET Overview. Available at: https://netpatientnetwork.ie/overview/ Last accessed: November 2021
NET Patient Network Annual Patients’ Day
Patient advocacy group NET Patient Network is holding a virtual NET cancer event on November 13th 2021 to help improve awareness of NETs among new and existing patients, and encourage national conversations to help support diagnosis and unmet patient needs. New and existing patients, as well as their carers, friends and family can register for the educational event at the following link with insights to be shared from many of Ireland’s leading NET clinicians. https://us02web.zoom.us/webinar/register/WN_X0FFeE4FTBGHlX9ls-Gm9Q
Commenting on the new research findings, Chair of NET Patient Network Mark McDonnell said,
“There is a significant delay in confirmation of NETs diagnosis for many patients in Ireland – as the research from Ipsen highlights. Sadly this means that a significant volume of patients are being diagnosed at quite a late stage in the disease development. Indeed, almost half of patients (41%) in Ireland last year had stage IV NETs at the point of their diagnosis.
Once diagnosed with a NET 78% of patients are reassured by the course of action and care provided by healthcare professionals, but we have a hurdle to overcome to reach that stage in terms of improving our national rate and pace of diagnosis. Every NET patient should also have their case reviewed or have an input into their care by a NET specialist clinician.”
General Manager for Ipsen Ireland Paul Byrne added,
“Neuroendocrine tumours may be described as ‘quiet’ cancers which are not as prevalent as other types of cancer, but that doesn’t mean we should deal with them quietly. By encouraging more national conversations surrounding NETs among new and existing patients, healthcare professionals and indeed the wider public, we can hopefully encourage proactive consideration of these uncommon cancers with the ultimate aim of earlier diagnosis and treatment.
Our team in Ireland is committed to helping address unmet patient needs and support better quality of care for those living with rare and underserved conditions like neuroendocrine tumours. We hope that the virtual event being hosted by the NET Patient Network for World NET Cancer Day 2021 will shine much needed light on a lesser-known condition for a national audience.”
NET Patient Network Annual Patients’ Day 2021 Virtual Event
Date: Saturday 13th November
Time: 10am – 1pm
Location: Virtual event held via zoom
Registration: https://us02web.zoom.us/webinar/register/WN_X0FFeE4FTBGHlX9ls-Gm9Q
Attendees: Open to new and existing patients; friends, family and carers of NETs patients, healthcare professionals, and members of the general public
Agenda:
10:00 – 10.05 Welcome and introduction (Mark McDonnell, Chair NPN)
10:05 – 10:15 NET Overview and PRRT in Ireland Update
Prof Dermot O’Toole, National Lead for NETs, NET CoE, SVUH
10:15 – 10:25 Southern Region Update
Dr Derek Power, Mr Críostóir Ó Suilleabháin
Cork University Hospital / Mercy University Hospital)
10:25 – 10:30 Irish PRRT Results
Dr Hussein Almeamar, NET CoE, SVUH
10:30 – 10:35 Improvements and Procedures in Scans and Diagnostics
Dr Stephen Skehan, Head of Radiology, SVUH
10:35 – 10:40 Chemotherapy and NETs
Dr Mark Doherty, NET CoE, SVUH
10:40 – 10:45 Research in Irish NET Group
Dr Rachel Crowley, NET CoE, SVUH
10:45 – 10:55 A Patient Journey
Mr Tom O’Donohue, NET Patient, Tipperary
11:05 – 13:00 Q&A Panel with NET Specialists
About NET Patient Network
For information visit https://netpatientnetwork.ie/
About Ipsen Ireland
Ipsen Ireland is a key part of Ipsen’s global biopharmaceutical business and is committed to delivering transformative medicines that improve the lives of patients in need across three therapeutic areas – oncology, rare diseases and neuroscience.
Ipsen has been in Ireland for over 30 years, pioneering innovation across manufacturing, R&D and commercial activities at its site in Blanchardstown, Dublin. Ipsen Ireland produces the active ingredients for two of the company’s innovative cancer treatments.
Ipsen’s expert team of 165 employees in Ireland share a common mission to continuously innovate and deliver transformative care for patients with underserved and life-threatening conditions. This focus on innovation and specialty care aligns with Ipsen’s global commitment to launch at least one new meaningful indication or medicine each year.
About the Ipsen Ireland research
The Ipsen Ireland survey was conducted in October 2021 among the NET Patient Network database of patients living with NETs in Ireland.
About Ipsen Global
Ipsen is a global mid-size biopharmaceutical company with a focus on transformative medicines in oncology, rare diseases and neuroscience. Ipsen also has a well-established consumer healthcare business. With total sales over €2.5 billion in 2020, Ipsen sells more than 20 drugs in over 115 countries, with a direct commercial presence in more than 30 countries. Ipsen’s R&D is focused on its innovative and differentiated technological platforms located in the heart of the leading biotechnological and life sciences hubs (Paris-Saclay, France; Oxford, UK; Cambridge, US; Shanghai, China). The Group has about 5,700 employees worldwide. Ipsen is listed in Paris (Euronext: IPN) and in the United States through a Sponsored Level I American Depositary Receipt program (ADR: IPSEY).
