RARE Daily

Invitae Enters Partnership with AstraZeneca for Real-World Data Sharing to Inform Rare Cancer Research

October 27, 2022

Rare Daily Staff

Invitae said it has entered a partnership with AstraZeneca to use Invitae’s Ciitizen natural history data in a retrospective and prospective study of patients diagnosed with cholangiocarcinoma, a rare bile duct cancer.

The partnership will enable sharing of high-quality, patient-consented data from the patient community of the Cholangiocarcinoma Foundation, a patient advocacy group whose mission is to find a cure and improve the quality of life for those with cholangiocarcinoma.

“CCF partnered with Invitae to use the Ciitizen data platform in its earliest days because we saw a need for our patient community to gain control of their own medical records and drive research with their own health data,” said Stacie Lindsey, CEO of the Cholangiocarcinoma Foundation. “This is a groundbreaking example of how patient-initiated research and the quality of data Invitae’s Ciitizen platform produces from medical records can inform real-world questions that will help develop, improve and expand therapies.”

Identifying and recruiting patients with rare diseases into clinical studies is difficult, making it challenging to understand the etiology, disease course, differences among 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 in the future.

AstraZeneca produced the first approved immunotherapy-based treatment for people with cholangiocarcinoma. Patients on AstraZeneca’s TOPAZ-1 regime and other treatment plans will be followed for the next three years, to determine the long-term efficacy of the currently available treatment options in hopes that higher-quality drugs can be developed leading to better patient outcomes. Data collected will include tolerability of the regimen, autoimmune comorbidities and their impact on outcomes, sequencing of treatments, and observation of real-world usage of Abraxane added to TOPAZ-1 backbone.

The data used in this partnership, collected on behalf of patients with cholangiocarcinoma or their caregivers, is de-identified and shared only with their consent, and represents the richest aggregation of real-world clinical evidence for patients with cholangiocarcinoma.

The data generated by Invitae’s Ciitizen platform is comprehensive, leveraging the HIPAA right of access to gather full medical records, longitudinally, from all of the patients’ sites of care. Patients have complete access to the records for their own use and are also able to remain involved and informed about the research throughout the study, highlighting the benefits of this unique patient-centered research model.

“With this investment from AstraZeneca, our Cholangiocarcinoma Foundation patients are joining the research data ecosystem and seeing their data used to advance cures for this community, something our patients have always believed in,” said Farid Vij, general manager of patient network and data at Invitae. “This reflects our core ethos, that data belongs to the patient and is more powerful when shared, and also demonstrates that we can generate data at a level of quality that can inform key insights and decisions for both AstraZeneca and cholangiocarcinoma patients. We can’t wait to see what important disease and treatment insights AstraZeneca learns from this meaningful cohort.”

Photo: Farid Vij, general manager of patient network and data at Invitae

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