NEW YORK – Invitae said on Thursday that it has partnered with AstraZeneca to use the genomic testing firm's Ciitizen natural history data platform in a retrospective and prospective study of patients diagnosed with cholangiocarcinoma, a rare bile duct cancer. Financial terms of the deal were not disclosed.
The partnership will facilitate sharing of data from the patient community of the Cholangiocarcinoma Foundation, an advocacy group whose mission is to find a cure and improve the quality of life for individuals with these tumors.
Invitae's Ciitizen program, which it acquired last year and launched earlier this year, aims to address the challenges of recruiting patients with a rare disease into clinical studies by enabling users to gather, store, organize, and maintain their own medical records in a centralized online database, with personal control over third-party access.
"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," Stacie Lindsey, the foundation's CEO, said in a statement.
"We are thrilled that AstraZeneca is utilizing our data to power their life-changing science. Our patient community wants their health data to support research that improves treatment options in this aggressive and rare cancer," she added.
According to Camille Hertzka, VP and head of US oncology medical affairs at AstraZeneca, although the pharma firm has already developed an immunotherapy treatment for cholangiocarcinoma that extends long-term survival, it is "not stopping there."
Under the partnership, researchers will follow patients on AstraZeneca's TOPAZ-1 regime and other treatment plans for the next three years, tracking the long-term efficacy of current treatments to inform development of higher-quality drugs. 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 the TOPAZ-1 backbone.
The data used will be de-identified and shared only with patients' consent.