Global patient registry to expand cholangiocarcinoma knowledge worldwide offered by Cholangiocarcinoma Foundation in partnership with Invitae
The Cholangiocarcinoma Foundation (CCF) in partnership with Invitae has updated its global patient registry, offering a unique international data pool for cholangiocarcinoma (bile duct cancer) history and treatment worldwide. The updated International Cholangiocarcinoma Patient Registry (ICPR) is designed to accelerate and support research into earlier and more comprehensive diagnoses.
The registry serves to advance life-extending therapies and treatments, new and repurposed drug trials, protocols and medications addressing debilitating treatment side-effects, possible end-stage complications, and ultimately efforts leading to a cure for cholangiocarcinoma. With an aggregate body of evidence within the registry, clinicians, researchers, industry and health funders may access the pooled data to better understand the most effective, safe, economical and clinically-relevant treatments for cholangiocarcinoma.
“The ICPR will allow us to understand the natural history of the cholangiocarcinoma subtypes, changes in the disease over time, and identify disease risk factors and their impact on the treatment outcome. Also, it will allow us to evaluate the treatment effectiveness using real-world data, design better clinical trials, and develop new targeted therapies,” said Reham Abdel-Wahab, Chief Scientific Officer of the Foundation.
The improved registry’s key benefits for patient participation include:
- Contributing and driving research forward,
- Improving diagnosis and early detection,
- Advancing therapies,
- Improving the quality of life,
- Accessing all medical records and images,
- Ability to share medical records however you choose, enabling your ability to get second opinions.
“Being diagnosed with cholangiocarcinoma (CCA) places me in a very special, select group of individuals in the U.S., one of approximately 10,000 persons diagnosed each year. We are a special family with the unenviable but unique bond of having a little-known and understood severe form of cancer,” said Fred Neubauer, a Stage IV CCA patient since 2019.
He continued, “Now the CCF and global partners are making our family much larger with the advent of the ICPR. Strength in patient numbers, data and global treatment knowledge offers all of us hope; hope that could result in the advancement of early detection, new treatment opportunities through global clinical trials, and quality of life-extending treatment opportunities.”
ICPR was funded by Foundation donors in conjunction with indirect research and education support from industry partners. The registry is 100% free of charge to patients. Patients can join electronically and consent to inclusion in the registry that was designed and is maintained by the PROS Foundation.
PROS is a leading provider of web-based clinical outcomes systems. Its expertise in cutting-edge encryption ensures that governance and protection of data are maintained at leading global standards. Regular penetration testing is organized to ensure that security is upheld as storage expands to meet the needs of growing datasets.
CCF has set the standard on how organizations can support patients in need while driving forward key therapies and solutions for their care. At Invitae, our core tenets have always been that patients own and control their data, and data is most valuable when shared. It is a privilege to partner with CCF to power the ICPR and create one of the most valuable assets to push forward research and care for CCA patients,” said Farid Vij, Ciitizen president and general manager.
The ICPR is available in English only at this time. All patient information is kept confidential in accordance with Health Insurance Portability and Accountability Act (HIPAA) and European General Data Protection Regulation (GDPR) regulations. A brief webinar for patients to learn more about the registry took place on June 9th. Thirty-five patients registered within the span of seven days after the event.
Invitae Corporation (NYSE: NVTA) is a leading medical genetics company, whose mission is to bring comprehensive genetic information into mainstream medicine to improve healthcare for billions of people. Invitae's goal is to aggregate the world's genetic tests into a single service with higher quality, faster turnaround time, and lower prices. For more information, visit the company's website at invitae.com.
About Invitae Ciitizen
Ciitizen, by Invitae, was founded by Anil Sethi in honor of his sister Tania, who died of metastatic breast cancer in 2017. Invitae aims to provide patients with their comprehensive health information—including clinical, genomic and imaging data—and give them a choice of sharing it with whomever they want at no charge to the patient or their family.
"The ICPR will allow us to understand the natural history of the cholangiocarcinoma subtypes, changes in the disease over time, and identify disease risk factors and their impact on the treatment outcome. Also, it will allow us to evaluate the treatment effectiveness using real-world data, design better clinical trials, and develop new targeted therapies."
Chief Scientific Officer