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The primary objectives of the Australasian Neuroendocrine Tumour Register are to promote national and international collaborative research in conjunction with optimal clinical management of rare neuroendocrine tumours (e.g. carcinoid, gastrinoma, insulinoma and VIPoma). The Register is suported by the Australasian Neuroendocine Tumour Interest Group, membership of which is available to Australian and New Zealand endocrinologists, gastroenterologists, oncologists, surgeons and other individuals involved in relevant clinical and research activities.

The Register and Interest Group have the following aims:

1. To establish and maintain a national neuroendocrine tumour register.
2. To support collaborative national and international studies into the pathogenesis, behaviour and clinical management of neuroendocrine tumours,
3. To promote appropriate investigation and management of neuroendocrine tumours.

Secretory neuroendocrine tumours comprise an anatomically diverse group of benign and malignant neoplasms. The management of these tumours often involves cross-disciplinary collaboration. Tumour rarity creates significant barriers to both the clinician and researcher. Individual and institutional experience with specific tumour species is often limited to fewer than one incident case per year. To assemble a sufficient number of cases to support effective clinical management and basic research requires multidisciplinary cooperation at a national and international level.

During September of 1999 a feasibility survey was undertaken to determine if support existed for establishing a neuroendocrine tumour register and related interest group. Specialists in key clinical areas were surveyed to assess interest in establishing the Australasian Neuroendocrine Tumour Interest Group and Register (ANTIGR) , optimal mode(s) of incident case reporting, prefered organisational structure and governance. It was concluded from this survey that ANTIGR was feasible. ANTIGR was subsequently established with the support of a research grant from Novartis pharmaceuticals.

ANTIGR seeks the active participation of endocrinologists, gastroenterologists, oncologists and surgeons. Whilst the main focus of ANTIGR is enteropancreatic neuroendocrine tumours (e.g. carcinoid, gastrinoma, insulinoma, VIPoma) and extra-abdominal carcinoid tumours (e.g. bronchial and thymic carcinoid), the capacity exists for ANTIGR to interact with, and support, related interest areas such as a pituitary register.

The ANTIGR secretariat is located at the University of Tasmania (Hobart). Case reporting is based on provision to the Register (by the treating clinician) of deidentified demographic information, histological diagnosis and the submitting clinician's contact details. Governance of Registry case data is vested in a multidisciplinary data management commitee.

Risk of physical, mental or social harm?		NO
Collection of body tissues or fluid samples?		NO
Administration of any substance or agent?		NO
Possibility of physical harm, pain, or discomfort above the everyday norm?		NO
Possibility of emotional distress, anxiety or embarrassment above the everyday norm in the subjects or others?		NO
Obtaining information which may be prejudicial to participants?		NO
Obtaining data containing personal information?		NO
Covert research techniques?		NO
Secondary use of human specimens?		NO

The Register receives and records de-identified patient demographic data, tumour histological and endocrine biochemical data. The data to be collected is:- tumour histopathological diagnosis, full pathology report excluding any patient identifying details, date at histological / hormonal diagnosis, a brief description of the patient's presenting complaint, hormonal profile (relevant positive and negative results), full date of birth, residential post code, clinician's name and contact details, and a case number. Specific research initiatives requiring case identification / contact will require:

1. Submission to and approval by the Register Management Committee,
2. Specific approval by the appropriate Institutional Research Ethics Committee(s),
3. Contact with, and permission from the submitting clinician.