Pancare Foundation supports programs designed with the long-term goal of improving the treatment and survival of patients with pancreatic, liver, biliary, oesophageal and stomach cancers.
Currently supported programs:
Currently supported programs:
In conjunction with Monash University and Department of Epidemiology & Preventive Medicine (DEPM), Pancare Foundation is helping to develop a specialised upper gastrointestinal (UGI) registry. The UGI-CR project is overseen by a steering committee encompassing a range of experts in gastrointestinal cancers, including surgeons, medical oncologists, data experts, a family carer as well as other stakeholders.
The registry has several aims, but the primary aims are:
The registry will:
Beginning with people with pancreatic cancer, the UGI-CR will invite patients from a large number of hospitals, including metropolitan and regional, public and private, to participate in the registry. With the patient’s consent, the registry will gather important pieces of information from their medical record, that will allow us to assess the quality of health care they receive, including the diagnostic procedures and treatment they receive, and how their disease progresses.
This will include information such as:
The registry will also collect information directly from patients about their symptoms. All information is treated as highly confidential and access to patient information strictly restricted.
In the future, the registry is likely to be linked to a bio bank – a repository of preserved tumour and blood specimens from participants – to support discoveries of new diagnostic tests and treatments.
Analysis of the registry data will detect variations in patient care and patient outcomes, and this information will be fed back to clinicians and hospitals, so that improvements can be made to the way they work. For example, if one particular hospital were found to have a higher than average percentage of patients experiencing complications from pancreas surgery, this would initiate an investigation and allow the hospital to fix the problem early. On the other hand, if a hospital were found to have a better than average result (e.g. a particularly short time from diagnosis to first treatment) then that would also be investigated, and be used as an example of how things can be done better.
Monash University already operates a number of clinical quality registries, including the Prostate Cancer Registry and the Victorian State Trauma Registry that have led to significant improvements in patient care and patient safety, and have inspired a number of important research projects. The UGI-CR will do the same for people with upper gastrointestinal cancers and is a very important step towards improving outcomes.
In a very small number of patients with a strong family history of pancreatic cancer, that may include two or more first degree relatives affected by pancreatic cancer or a known genetic abnormality, screening using endoscopic ultrasound (EUS) surveillance may be considered. The true value of screening is unknown and is performed as part of research studies. Research has shown that early detection and treatment of pancreatic cancer greatly improves survival rates.
A screening trial at Austin Health is currently underway. This trial combines the work of the departments of Surgery, Gastroenterology, Genetics and the Olivia Newton John Cancer Centre at Austin Health in collaboration with Sydney’s St Vincent’s Hospital and the Garvan Institute of Medical Research. The aim of this study is to identify and screen high-risk individuals using endoscopic ultra-sound, a diagnostic test to detect small changes to the pancreas.
Who is eligible?
What is involved?
To register for Familial Pancreatic Cancer Screening email firstname.lastname@example.org