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PATIENTS DIAGNOSED (WHO, 2012)
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LIVES LOST (WHO, 2012)
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%
CLINICAL TRIAL ENROLLMENT RATE

“The interests of the subject must always prevail over those of science and society”

World Medical Association, Declaration of Helsinki, 1961 

How many clinical trials in oncology today meet this basic moral requirement?

Asking a patient to lay down their lives in the name of scientific progress, and for the potential benefit of a future patient is a fundamentally flawed idea, that contradicts the very survival instinct that has driven millions of years of human evolution. A quick glance at oncological clinical trial enrolment rates provides the hard evidence.

This website has been built by patients and their relatives to encourage and facilitate patient orientated oncological research, bringing together every stakeholder in the cancer paradigm for the first time: patients, doctors, researchers, regulators, and funding partners.

There are many cancers where survival rates are still appalling, particularly those with orphan status where patient populations are not large enough to make private sector engagement economically viable. We felt there was an urgent requirement for a single platform where all cancer stakeholders could contribute expertise and cross-reference experimental research across different cancer silos. We want to see more clinical trial designs that offer a meaningful chance of survival to patients facing acute diagnosis – compassionate fatalism is not acceptable as a standard of care.

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Collaboration

As the history of oncology shows us, when patients and doctors are empowered to work together to drive innovation, rapid progress can be made. In the digital era, we recognize an urgent need to connect patients to the researchers who are working to save their lives, and conversely, connect those researchers directly to the demographic most likely to financially support their work. 

 

We hereby call on the scientific community to develop research protocols that are meaningful to  a patient facing terminal disease today. In return, we call on the patient community to engage, learn and then champion the research work you believe in the most. 

Proof of Concept

As our pilot CUSP-ND project demonstrates, by connecting isolated experts, patients, advocates and funding partners across different continents, we were able to create a powerful working group focused on delivering meaningful experimental therapies to patients.

RESEARCHERS

Connect & communicate, generate awareness & support for your work. Discover data, align with like-minded professionals

REGULATORS

Listen and learn from the patient population you serve, educate & explain how change can be brought about

FUNDERS

Discover initiatives that are directly validated by patient population, know that 100% of your donation reaches the front line of oncology

ADVOCATES

Communicate & share, drive awareness of this network to empower the community

PATIENTS

Find meaningful clinical trials, engage with researchers & support the projects you believe in

How it works

It takes just a few seconds to register your profile and gain unlimited access to this site. In order to then progress to participating actively, you will need to authenticate your status as a physician, patient, regulator, advocate or funder, at your leisure.

We require this step because this then allows every member to filter discussions and responses by different stakeholder groups, and to be sure the data presented reflects opinion and comment from ratified sources.

Above all we hope you will contribute, without which this platform can never reach its full potential.

This website is built and maintained by volunteers and patient advocates. There is no revenue generated by this website.