Research Programs

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:

Pancreatic cancer registry

Pancare was founded to increase survival rates from pancreatic, liver, biliary, oesophageal and stomach cancers and to support people and families affected by these cancers. To further this purpose, Pancare is pleased to be the Community Partner for the Upper Gastro Intestinal Cancer Registry (UGI-CR).

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:

  • To help ensure that all patients with upper gastrointestinal cancers receive the best standard of care
  • To act as a platform for additional research projects, including clinical trials

The registry will:

  • Provide population-based information on patterns of care
  • Assess variation in treatment and the relationship to patient outcomes such as health-related quality of life
  • Determine factors predictive of optimal patient outcome
  • Determine the degree in which treatment aligns with evidence-based guidelines
  • Feedback benchmarked performance reporting to all participating sites
  • Support change in practice to align with evidence-based best practice care

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:

  • Dates and results of ultrasound, CTR, MRI scans
  • Dates and results of blood tests, biopsies
  • Medications
  • Details of specialists consulted, surgery performed, chemotherapy and radiotherapy given
  • Details of additional services provided, e.g. dietitian, psychologist

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.

logo-upper-gi-cancer

logo-monash-university

Familial Pancreatic Cancer Screening

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?

  • People with at least two close relatives known to have pancreatic cancer.
  • People who carry a BRCA2 gene fault and have a family history of pancreatic cancer.
  • People with Peutz-Jeghers Syndrome.
  • People with hereditary Pancreatitis.
  • People with Familial Atypical Mole Melanoma Syndrome that carry the p16 gene with at lease one first degree relative known to have pancreatic cancer.
  • People who carry a PALP2 gene fault who have one first degree relative known to have pancreatic cancer.
  • Mismatch repair gene fault carriers (Lynch syndrome) with one first degree relative with pancreatic cancer.

What is involved?

  • Questionnaire
  • Genetic Counselling
  • Endoscopic Ultrasound and Blood Test

To register for Familial Pancreatic Cancer Screening email info@pancare.org.au

Australian Pancreatic Club

The Pancare Foundation supports the Australasian Pancreatic Club (APC) in its endeavors to promote collaborative research within Australia and abroad.  The APC was established in 2002 to provide a forum for clinicians and scientists with an interest in clinical and basic research into diseases of the exocrine pancreas. Current members of the APC include eminent gastroenterologists, surgeons and researchers from Australia and New Zealand. The annual meetings of the APC allow a unique opportunity for pancreatologists to discuss current and future research directions in pancreatic pathobiology and to initiate collaborations with research groups in the region.
logo-australasian-pancreatic-club