The NET Platform is the coalition of physicians, researchers, patient representatives, nurse specialists and industries working to address the needs of the NET community. The challenges of NETs, – Knowledge in diagnosis, Patient journey, Research and Innovation.
Policy recommendations on how
NET care can be improved
To address the numerous challenges in the management of rare cancers such as neuroendocrine tumours (NETs), NET patient representatives from INCA and its member organizations and leading healthcare professionals (The NET Platform), met with policy makers in the European Parliament on 10 November, World NET Cancer Day.
The stakeholders marked World Neuroendocrine Tumour Day and presented concrete policy recommendations on how NET care can be improved. The codified outline the challenges of NETs, their impact on patient lives and the importance for support to research in this field, by addressing 3 main themes: Knowledge in diagnosis, Patient journey, and Research and Innovation.
The patients have been represented by The International Neuroendocrine Cancer Alliance (INCA), whose mission is to be the global voice in support of neuroendocrine cancer patients, is an alliance of 20 member organizations from 17 countries around the world.
Nothing about us without us! Organizations representing patients with NETs should be consulted on all policy and legislation that will affect NETs patients.
Knowledge in diagnosis
The very recognition of NETs and their timely diagnosis represents a significant challenge that can only be overcome through raising awareness amongst medical professionals. The identification of a rare condition from relatively common or ambiguous symptoms is a challenge which can only be met through clear guidance for GPs on the ground.
Given the multidisciplinary nature of NETs, the care pathway is an essential focus of these Recommendations. The creation of centres and networks through which specialised experts can engage with all those who play a role in the care of NET patients, would represent a significant step towards improving care for NET patients in the long term.
Research and Innovation
Continuous research and innovation in this field is crucial to making positive steps towards improving cancer care. Member States must ensure that incentives are in place that encourage the development of new treatments for NETs and provide dedicated calls in research funding programs and EU funding schemes such as Horizon 2020.
Neuroendocrine (NET) Cancer
Neuroendocrine Tumours (NETs) are a family of cancers that cause tumours in the neuroendocrine system. The neuroendocrine system consists of nerve and gland cells. It produces hormones and releases them into the bloodstream. NETs are generated by cells that release the hormones. The majority of NETs are found in the intestine, pancreas and the lungs.
NETs and their symptoms severely impair quality of life.
Diagnosis is often difficult as symptoms resemble those of other more common diseases. For this reason, and because NETs are relatively rare, patients are commonly misdiagnosed and diagnosed fortuitously. The time taken to diagnose impacts the treatment options for the patient. Researchers are rapidly developing new screening and imaging technologies which could prove crucial in improving diagnosis.
Being given a diagnosis of having a potentially lethal cancer, such as NETs, has life changing effects for the patient and also for their families. Progress of the diseases can be slow, but it can also be lightning fast.
Recommendations Summary & Conclusions
These policy recommendations represent a call to action from specialists in the field for Member States and the European Commission to ensure appropriate policies on NETs. Their direct implementation by decision makers can help ensure appropriate long term care for patients with NETs.
KNOWLEDGE & DIAGNOSIS
- Member States should support the NET community in its effort to educate healthcare professionals and foster knowledge-sharing on NETs regarding symptoms and diagnosis methods.
- Member States that do not have a focused policy on NETs should consult specialists and utilise recommendations for best practices drafted by those specialists, based on their experience.
- The NET community should work collaboratively on knowledge & diagnosis to identify recommendations for the European Union such as on hurdles to access to appropriate diagnosis and awareness raising on NETs.
- European Reference Network covering NETs, as a more formal step for currently existing national networks would be beneficial and it is important that any future European Reference Network take into consideration the views of experts in this field and rely on already existing networks.
- Considerable variation exists across Europe in the care pathway for NETs and it is important that best practices from different Member States are identified and disseminated, for example through EU initiatives such as CANCON.
- A very effective way to improve treatment is to improve diagnosis of patients before tumours have spread to improve chances of surgery being possible.
- Member States should improve access to specialist care effectively including surgeons, physicians and nurses.
- Standards of care developed by ENETs and national networks or centres of expertise should be utilised to fight inequalities in treatment of NETs in Europe.
- Member States should support a multidisciplinary treatment approach for NET patients by including all relevant experts across disciplines to identify appropriate treatment.
- Governments and healthcare providers must proactively consult NET patients and medical experts on NETs when elaborating policies affecting NET patients.
- The NET community should work collaboratively on the topic of patient journey to identify recommendations for the European Union.
RESEARCH & INNOVATION
- Member States should ensure appropriate incentives to support the development of additional treatment options.
- The NET community should work collaboratively on research & innovation to identify recommendations for the European Union such as on an assessment of opportunities for support to research for NETs under Horizon 2020 and research funding programs.
Read the complete Policy recommendations in our news section.
Read more about the Policy recommendations here ……..
The Zebra, and NET Cancer Day
The NET Cancer Day is organized by the International Neuroendocrine Cancer Alliance on 10 November each year to raise awareness about this condition. The colors of the Zebra are used to represent NETs to highlight the challenge of diagnosis. Read more – why the zebra ….
– when one hears hooves, consider that it may be the rarer zebra and not necessarily the more common horse!
The International Neuroendocrine Cancer Alliance
The International Neuroendocrine Cancer Alliance (INCA), whose mission is to be the global voice in support of neuroendocrine cancer patients, is an alliance of 20 member organizations from 17 countries around the world. Read more ….
Patients representatives from INCA and INCA member organizations participating at the event; Teodora Kolarova, INCA, Bulgaria, Dirk Van Genechten, Vzw NET en MEN Kanker Belgium, Christine Rodien Louw, APTED (Association de Patients porteurs de Tumeurs Endocrines Diverses), France, Mark McDonnell, NET Patient Network, Ireland.
The NET Platform.
The NET Platform is the coalition of physicians, researchers, patient representatives,
nurse specialists and industries working to address the needs of the NET community. Read more ……