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Neuroendocrine Tumours
 

2,700 - Approximate number of people in Ontario living with neuroendocrine tumours

660 - Estimated number of people in Ontario diagnosed with neuroendocrine tumours each year

Neuroendocrine cells are widely distributed throughout  the body. They produce hormones that regulate many important bodily functions. Tumours arising from these cells can be of many different types and therefore require specific clinical management.  

Our Role

Our Neuroendocrine Tumours Steering Committee guides the development and implementation of the provincial oversight program. By developing a performance management and communications strategy, they ensure equitable access to radionuclide therapy for patients with NETs. Members of the Steering Committee include patients, clinicians and administrators from across the province.

Radionuclide Therapy Services

Radionuclide therapy services for Ontarians with neuroendocrine tumours are provided at the London Health Sciences Centre (LHSC) and through the Ministry of Health and Long-Term Care’s Out of Country Services program.

The radiopharmaceuticals indicated for the treatment of neuroendocrine tumours are approved for use by Health Canada on a case-by-case basis through the Special Access Program (SAP), but have not received a Notice of Compliance from Health Canada.

Provincial Review Looks at Safety and Access

In February 2010, we established a formal provincial review – with support from the Program in Evidence-Based Care (PEBC), an internationally recognized guideline development program.

Goals:

  • To ensure that the most appropriate radiopharmaceuticals are safely used on the right patients
  • To ensure that neuroendocrine tumour patients in Ontario who are eligible for radionuclide therapy have equitable access to in-province treatment

Provincial Guideline

Following a systematic and comprehensive review, the PEBC published a guidance document that indicated Lutetium is the first choice of therapeutic radiopharmaceutical for this population.

Expert Panel Report

In 2010, Cancer Care Ontario brought together an Expert Panel of doctors, administrators and patient representatives.  The objective of the Panel’s work was to make recommendations on the provision of safe and equitable access to radionuclide therapy for patients with neuroendocrine tumours in Ontario. In 2011, these recommendations were reported in the Radionuclide Therapy for Patients with Neuroendocrine Tumours (NETs) in Ontario: Expert Panel Report. The Report can be found here:

Neuroendocrine Tumours Steering Committee

The Neuroendocrine Tumours Steering Committee will help oversee the implementation of the provincial program that ensures patients with NETs have appropriate access to radionuclide therapy. This Committee will work with members of the multi-centre provincial treatment group and leaders of the provincial clinical trial to ensure the delivery of high-quality care through regional collaboration using existing expertise.

NETs Ontario Clinical Trial

A provincial treatment program to offer radionuclide therapy was launched in July 2016. This program makes radionuclide therapy, within the context of a Health Canada approved clinical trial, available to patients that can benefit from it. It will gather evidence on the effects of the radiopharmaceutical on patients, with the goal of receiving a Notice of Compliance from Health Canada.

Four hospitals have come together to be part of this clinical trial:

  • University Health Network/Princess Margaret Cancer Centre
  • Hamilton Health Sciences Centre/Juravinski Cancer Centre
  • London Health Sciences Centre
  • Sunnybrook Health Sciences Centre/Odette Cancer Centre

These centres will share expertise and take part in a provincial multi-centre multidisciplinary cancer conference (MCC). This conference is a forum for clinicians to bring cases for discussion, when additional input is desired, to inform treatment decisions for NET patients.

To determine if a patient is potentially a candidate for the clinical trial, a patient’s clinician may refer the patient’s case to the provincial MCC for review. If they decide that a patient may be a candidate, the patient’s case will be referred to one of the clinical trial sites to be assessed against eligibility criteria. Only patients who meet the eligibility criteria may receive treatment as part of the clinical trial. The provincial MCC may propose other treatment options for patients who are not candidates.

Questions regarding the provincial MCC can be directed to Dr. Shereen Ezzat at shereen.ezzat@uhn.ca, or to submit a case for review, please email the MCC Coordinator, Antoinette Hyatt at antoinette.hyatt@sunnybrook.ca.

For questions regarding the NETs Ontario Clinical Trial, please contact Dr. Rebecca Wong at rebecca.wong@rmp.uhn.on.ca

Download the Frequently Asked Questions document for more information:

Last modified: Thu, Sep 29, 2016
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