Movember to launch world’s first cancer registry ‘super network’

Image Credit: Movember.

Movember is launching the world’s largest network of prostate cancer patient registries which will have the power to transform the treatment and care of the disease by harnessing the real world experiences of over 130,000 men.

The global ‘super network’ – believed to be the first of its kind – will contain detailed clinical information on the diagnosis, treatment and survivorship of prostate cancer patients from over 15 countries.

The project will fast-track efforts to improve the treatment and care for men diagnosed and living with prostate cancer.

Movember is aiming to grow the network to include data on 250,000 men within the next five years.

“Effective clinical quality registries significantly improve the quality of life of men with prostate cancer, and offer the potential to extend survival,” Paul Villanti, Executive Director of Programs at Movember said.

“Being able to establish a ‘super network’ of registries that supports biomedical research, clinical trials, treatment quality improvement and personalised care and support for men living with prostate cancer is a major step forward and has the power to revolutionise prostate cancer treatment and care.

“Within the next five years, we are aiming to include the experiences of over 250,000 men,” Paul said.

The data will enable prostate clinicians throughout the world to measure and benchmark the health of their patients after treatment, providing them with vital information to improve the quality of prostate cancer treatment and care.

The patient registries will deliver personalised care to more men as the data will allow cancer specialists to monitor how patients are responding to new generations of therapies in the real world, outside of clinical trials.

It will enable researchers to fast track the implementation of clinical trials that enable us to understand which new therapies, or combinations, deliver the best outcomes for patients in a real-world setting.

It will improve patient access to digital survivorship resources such as Movember’s True North initiative, which provides men and their families with treatment information and tailored lifestyle advice. This enables them to manage the physical and mental side effects of living with cancer, as well as the long-term side effects of treatment.

In order to deliver this ambitious project, Movember has announced a landmark partnership with Montreal-based Electronic Data Capture (EDC) and registry software company Dacima Software Inc. (Dacima) to design and develop a new registry database. Dacima has extensive experience in designing registry databases for different acute and chronic diseases, vaccine monitoring, surveillance of infectious diseases, medical procedures and medical devices.

“We can only truly accelerate improved health outcomes for men through global integration of biomedical research, clinical trials and improved treatment and care. We need global technology partners that enable us to achieve this vision,” Paul said.

“We’re delighted to be working with Dacima Software as a technology partner that will lay the foundations for us to achieve our aim of enabling men to enjoy a better quality of life following a prostate cancer diagnosis,” Paul said.

The upgraded system will allow data from existing patient registries to be integrated, creating the most comprehensive and detailed prostate cancer surveillance system anywhere in the world.

The project will start with the Prostate Cancer Outcomes Registry – Australia and New Zealand (PCOR-ANZ) database. PCOR-ANZ, now in its fifth year of operation, currently holds the details of 67,570 men and is aiming to identify population-wide trends in diagnosis and treatment. Movember-supported patient registries from other countries will soon join the network.

Ryan Fritz

Ryan Fritz started The Advocate in 2014 to provide not-for-profits and charities another media platform to tell their worthwhile hard news stories and opinion pieces effortlessly. In 2020, Ryan formed a team of volunteer journalists to help spread even more high-quality stories from the third sector. He also has over 10 years experience as a media and communications professional for not-for-profits and charities and currently works at Redkite, a childhood cancer charity.

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