AHCC Registry

Hepatocellular carcinoma (HCC) is the sixth most common cancer in the world (5.6%), the second most common cause of cancer deaths, and afflicts approximately 800,000 people yearly (Stewart & Wild, 2014).

Real world data is crucial to an understanding of the disease effect and relevance. This investigator-initiated registry has therefore been established with the aim to provide a complete longitudinal picture of the HCC patient journey in several representative Asia- Pacific countries.

A first in the world, the HCC Registry is designed as a multi-national longitudinal cohort study of patients diagnosed with HCC between 1 January 2013 and 30 June 2018 in nine countries: Korea, Taiwan, Thailand, Japan, China, Hong Kong, Australia, New Zealand and Singapore.

The National Cancer Centre Singapore (NCCS), the Asian HCC Physician Network and SCRI are partnering QuintilesIMS for the development of the registry.

The SCRI team brings to this partnership our strength in coordinating the data collection in these countries which are within our Asia Hepatocellular Carcinoma (AHCC) trials network. We also design and manage the database for analysis.

Data from the Registry can help policymakers and healthcare professionals formulate strategies to manage liver cancer patients as collection and analysis of epidemiologic HCC data will play a critical role in guiding future disease prevention strategies and optimising patient management.

This public-private collaboration will also provide invaluable information to the pharmaceutical industry, governmental and insurance payers and physicians. It does so by delivering a complete longitudinal picture of the disease using a combination of associated (retrospective and prospective) clinical health costs and patient-reported outcomes data.

The Registry will help to answer important questions such as different treatment patterns/ strategies; healthcare resource use and costs of treatments; as well as first-hand insights to patients’ perspectives on their treatments.

Using this real world data, government planning agencies and pharmaceutical companies can benefit through bespoke analytics to establish their clinical development and product strategies.

Healthcare payers will have a good understanding of the disease burden and budget impact to better craft the public health policies. Physicians will be able to use this data to better optimise care pathways enhancing treatment outcomes for HCC patients.

The study aims to conduct analysis in the nine countries on:

  • Patient demographics
  • Diagnosis, treatments and disease outcomes
  • Healthcare resource use
  • Direct and indirect costs to HCC management
  • Patient health-related quality of life