The Cholangiocarcinoma Foundation hosts a patient registry, the International Cholangiocarcinoma Patient Registry (ICPR), that is a global database comprising patient medical histories and treatments for cholangiocarcinoma (CCA).
ICPR is a collaborative effort between patients and the global CCA research community. Through ICPR, patients are empowered to participate in unique and urgent research efforts by allowing investigators access to their de-identified health records, which are kept secure and confidential per the Health Insurance Portability and Accountability Act (HIPAA) and European General Data Protection Regulation (GDPR).
The goal of this clinical database is to accelerate and support research; for example, it can provide insights into strategies to facilitate earlier diagnoses of CCA. Such insights can also help to understand the most effective, safe, economical, and clinically relevant treatments for CCA. ICPR also encourages collaboration and communication between patients and their medical teams to review management options, seek second opinions, and coordinate treatment plans with caregivers.
Patients and caregivers can join the database online free of charge. In addition to collecting the medical records of current patients with CCA, ICPR accepts posthumous information on former patients to augment medical research.
“The ICPR allows us to understand the natural history of CCA subtypes and changes in the disease over time. It also allows us to identify disease risk factors and their impact on treatment outcomes, evaluate treatment effectiveness using real-world data, and design better clinical trials to aid in developing new targeted therapies,” said CCF Chief Scientific Officer Reham Abdel-Wahab.
ICPR is the first of its kind and seeks to advance life-extending therapies for CCA. In addition, it may catalyze new and repurposed drug trials, protocols, and medications addressing debilitating treatment side effects and possible end-stage complications. Ultimately, ICPR data are positioned to assist researchers in finding a cure for this rare disease with a poor prognosis.
Of the top 8 deadliest cancers, 7 are rare. Rare cancers have a 5-year survival rate <50%, and the 5-year survival rate for patients with CCA is approximately 20%, as patients face challenges with timely diagnoses, access to biomarker testing, and appropriate treatment options.
Studies of disparities in healthcare experiences among patients with CCA compared with patients with more common cancers are scarce. This fact sends an alarm of urgency for systematic data collection to reshape therapies and management approaches. ICPR may be able to identify these disparities and level the healthcare playing field.
ICPR plays a critical role in ensuring that clinicians are provided reliable and relevant data to design more effective care plans, leading to better patient outcomes.
“Being diagnosed with CCA places me in a very special, select group of individuals in the United States, 1 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 Cholangiocarcinoma Foundation and global partners are making our family much larger with the advent of ICPR. Strength in patient numbers, data, and global treatment knowledge offer all of us hope that we may achieve advancements in early disease detection, new life-extending treatment opportunities through global clinical trials, and strategies to improve quality of life.”
Clinicians can share the benefits of ICPR participation with patients by:
ICPR is only available in English and operates on a platform powered by Invitae Ciitizen.
https://cholangiocarcinoma.org/international-cholangiocarcinoma-patient-registry-icpr/
Cholangiocarcinoma (koh-LAN-jee-oh-KAR-sih-NOH-muh) is a highly lethal and rare bile duct cancer of the liver with a poor prognosis. With approximately 10,000 cases of cholangiocarcinoma being diagnosed in the United States each year, bile duct cancer is the second most common primary liver cancer in the world. It is often diagnosed at advanced stages when treatment is minimally effective, emphasizing the urgent need for novel therapies.
Ciitizen, by Invitae, was founded by Anil Sethi in honor of his sister Tania, who died of metastatic breast cancer in 2017. Invitae is a leading medical genetics company whose mission is to bring comprehensive genetic information into mainstream medicine to improve healthcare for billions of people. Ciitizen aims to provide patients with their complete health information—including clinical, genomic, and imaging data—and allow them to share it with whomever they want at no charge to them or their families.
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