Myeloproliferative Neoplasms Registry (ALLG MPN01)

The MPNs have until recently been under-represented in malignant haematology research. With the major developments in MPN biology and emerging new pharmaceutical agents this is a major potential growth area for basic/translational research and clinical trials. Currently, there is no co-ordinated approach to collect data on the numbers of MPN patients, and the current standards of care around Australia and New Zealand. This information is vital to planning and feasibility assessment for future clinical trials. A well-constructed database will generate useful data, as has been shown by international groups that have had high impact publications from retrospective data analysis. The database will hopefully be a major resource for translational research, particularly if patients in the registry also consent to ALLG tissue banking. Investigators with an interest in a specific subset of MPN patients will be able to query the database for a list of such patients and their characteristics. Data will be collected and entered online by registry physicians/sites at the time of diagnosis and annually for all patients enrolled on the registry. Physicians will be able to access the MPN Registry website at any time to enter and edit the data from their own patients, to access MPN registry documents or to view site-specific subject data reports. The registry will not be available for veiwing by the public or patients. Registry data will be downloaded for review and analyses on a regular basis by the Registry Management Committee. The registry will be ongoing.