Invitae announces partnership to share real-world data to inform research on rare cancers


– Using Invitae’s patient-centric data platform Ciitizen, AstraZeneca and the Cholangiocarcinoma Foundation will access the lived experiences of patients with a rare cancer to drive further research –

– Real-world insights translated into treatment patterns and outcomes of cholangiocarcinoma in a rapidly evolving disease landscape –

SAN FRANCISCO, October 27, 2022 /PRNewswire/ — Invitae (NYSE: NVTA), a leading medical genetics company, today announced a partnership with AstraZeneca (LSE/STO/Nasdaq: AZN) on the use of Invitae’s Ciitizen natural history data in a retrospective and prospective study of patients diagnosed with cholangiocarcinoma, a rare bile duct cancer. This partnership enables the sharing of high-quality, patient-approved data from the patient community of the Cholangiocarcinoma Foundation (CCF), a leading patient advocacy group whose mission is to find a cure and improve the quality of life for patients with cholangiocarcinoma.

“CCF partnered with Invitae to leverage the Ciitizen data platform in its early days because we saw a need for our patient community to take control of their own medical records and drive research with their own health data,” said Stacie Lindsey, CEO, Cholangiocarcinoma Foundation. “This is a groundbreaking example of how patient-initiated research and the quality of data that Invitae’s Ciitizen platform generates from medical records can shed light on real questions that help develop, improve and expand therapies. We are thrilled that AstraZeneca is using our data to power their life-changing science. Our patient community wants their health data to support research that improves treatment options for this aggressive and rare cancer.”

Identifying and recruiting rare disease patients for clinical trials is challenging, making it difficult to understand etiology, disease progression, differences between subpopulations, and the impact of novel treatments. This partnership is an innovative approach to solving these challenges by directly engaging the patient community to incorporate real-world data into AstraZeneca’s research today and into the future.

“We developed the first approved immunotherapy-based treatment option that significantly extends long-term survival and has a manageable safety profile for people with cholangiocarcinoma, but we don’t stop there,” he said Camille Hertzka, Vice President and Chief Medical Officer for Oncology, US, AstraZeneca. “We are committed to leveraging the power of Invitae’s CCF and Ciitizen dataset to better understand treatment patterns and patient outcomes and continue to improve care for this patient community.”

Patients receiving AstraZeneca’s TOPAZ-1 regimen and other treatment regimens will be followed over the next three years to determine the long-term effectiveness of currently available treatment options in the hope that higher quality drugs can be developed that lead to better ones lead to patient outcomes. Data collected will include regimen tolerability, autoimmune comorbidities and their impact on outcomes, sequencing of treatments, and observation of real-world use of Abraxane, which will be added to the TOPAZ-1 backbone.

The data used in this partnership, collected on behalf of patients with cholangiocarcinoma or their caregivers, is anonymized and shared only with their consent, and represents the richest collection of real-world clinical evidence for patients with cholangiocarcinoma platform is comprehensive and leverages HIPAA access rights to longitudinally collect complete medical records from all patient care settings. This approach addresses many of the limitations of other data sources, such as B. Provider electronic medical records and claims data that have been addressed by the FDA in recent draft guidance documents on the use of real-world data in regulatory submissions. Patients have full access to the records for their own use and can also participate in and stay informed about the research throughout the study, underscoring the benefits of this unique patient-centric research model.

“We are grateful to the Cholangiocarcinoma Foundation and their patients for entrusting us with their healthcare data, and to AstraZeneca for recognizing the potential of this data to inform their scientific endeavors,” the company said Farid Vij, General Manager of Patient Network and Data at Invitae. “With this investment from AstraZeneca, our Cholangiocarcinoma Foundation patients are joining the research data ecosystem and seeing how their data is being used to advance healings for this community, something our patients have always believed in. This reflects our core ethos that data belongs to the patient and is more meaningful when shared, and also shows that we can generate data at a level of quality that can provide important insights and decisions for both AstraZeneca and cholangiocarcinoma patients. We can’t wait to see what important disease and treatment insights AstraZeneca can learn from this meaningful cohort.”

Invitae’s Ciitizen platform enables the rapid and comprehensive collection and analysis of medical history data that aids in understanding the patient population and disease severity, provides an understanding of real-world treatment patterns and outcomes in this rare cancer, and advances knowledge of the disease expand and help identify potential drug development needs.

Join a live webinar Wednesday, November 2nd at 10 a.m. PT with speakers from AstraZeneca, the Cholangiocarcinoma Foundation and Invitae to learn how they are working together to improve the care of patients with cholangiocarcinoma. click here to register.

About Invitae
Invitae Corporation (NYSE: NVTA) is a leading medical genetics company whose mission is to bring comprehensive genetic information to conventional medicine to improve healthcare for billions of people. Invitae’s goal is to consolidate the world’s genetic testing into a single service with higher quality, faster turnaround and lower prices. For more information, visit the company’s website at

Safe Harbor Declaration
This press release contains forward-looking statements within the meaning of the Private Securities Litigation Reform Act of 1995, including statements regarding the Company’s belief that this collaboration demonstrates that the Company can generate data of a quality that can support important insights and decisions for partners and patients; and the benefits of the data generated through the company’s Ciitizen platform. Forward-looking statements are subject to risks and uncertainties that could cause actual results to differ materially, and reported results should not be relied upon as an indication of future performance. These risks and uncertainties include, among others: the Company’s loss history; the company’s competitiveness; the company’s failure to manage growth effectively; the Company’s need to scale its infrastructure ahead of demand for its testing and to increase demand for its testing; the Company’s ability to use rapidly changing genetic data to accurately and consistently interpret test results; security breaches, data loss and other disruptions; laws and regulations applicable to the Company’s business; and the other risks identified in the Company’s filings with the Securities and Exchange Commission, including those identified in the Company’s Quarterly Report on Form 10-Q for the current quarter June 30, 2022. These forward-looking statements speak only as of the date of this release, and Invitae Corporation disclaims any obligation to update these forward-looking statements.

Invite PR contact:
amanda McQuery
[email protected]
(628) 213-3283

SOURCE Invitae Corporation


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