UNLOCKING PATIENT DATA

Empowering

patients to share

their medical

information

WHY WE CARE

Patient data holds the key to new cancer treatments

Patients have the power to propel cancer research in a way no one else can. Their medical records, tumour samples and personal experiences hold clues about which cancers respond — or become resistant — to which therapies.

By empowering patients to share their anonymised health data directly with researchers, we can accelerate scientific knowledge and enable the research community to uncover new treatment options for cancer patients worldwide.

At Minderoo Foundation, we believe every cancer patient counts — and so should their data.

Development of breakthrough cancer therapies can be accelerated only if researchers can unlock the data stored locally in hospitals and research institutions. There is enormous value to be gleaned from the raw data of tumour samples, as well as from patient-reported outcomes.

OUR WORK

Our programs:

Federated Cancer Data Network

The Federated Cancer Data network aims to create a global, federated, not-for-profit resource that unlocks siloed patient data and builds a network of de-identified and harmonised cancer patient data — where data stay at their original location and are connected remotely — to power new collaboration, discovery and understanding.

Count Me In

Count Me In empowers cancer patients to contribute meaningfully to research by allowing them to opt-in and share with researchers their de-identified stories, medical information and biosamples in a way that protects their privacy.

WHAT YOU CAN DO

Join the movement or share the message

Count Me In is a program that enables them to share their information directly with researchers, helping to fast-track discoveries and improve cancer care. In 2019, Minderoo Foundation and Count Me In joined forces to enable adult and paediatric brain cancer patients, and patients with other rare cancers across North America, to contribute their data to research.

Know someone in the US or Canada who is living with or has conquered cancer? Let them know about joincountmein.org where they can sign up and become part of the movement that has recruited thousands of cancer patients across the US and Canada since 2015.

If you’re a researcher, go to joincountmein.org to explore the publicly available datasets this program has generated.