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NECST Network Update November 2018

Jean Hailes for Women's Health is managing the first Medical Research Future Fund allocation to endometriosis research announced in the Australian Government's National Action Plan for Endometriosis.

The $2.5 million will be used as the first building block for enabling research into national and international priorities for endometriosis research. Once a collaborative research environment has been established, further funding opportunities through the Medical Research Future Fund and other funding bodies, will be pursued.

NECST network budget, milestones and management outline

The milestones and management outline are detailed below. We are currently in the establishment phase and progressing well as described in the initial report provided to the National Action Plan for Endometriosis Implementation Committee. Approximately 65% of the allocated budget of $2.5 million will be allocated to specific research that meets the objectives of the funding. The remainder will be spent on management and establishment of the national clinical trial network, database and biosample repositories as per the funding agreement.

Establishment phase (Q3 2018 – Q1 2019):

Project governance

Establish national project oversight committee and chair with agreed project governance framework

Project management

Identify and engage project manager (Dr Cecilia Ng, 3 years allocated funds for salary and oncosts)
Develop detailed arrangements to support research active clinicians and scientists and develop call for applications

ALSWH analysis

Engage ALSWH fellow and start analysis ($128,000 per annum for 2 years allocated)

Project phase (Q2 2019 – Q4 2020):

Project governance

Prepare project completion report

Project management

Continue to manage database, clinical trial and biosample repositories and clinician and scientist networks

Database

Maintain national database including demographic data, medical and surgical history, symptom and impact data including quality of life instruments, sonography data, surgical datasets, pathology results, outcome data from index events (medical and surgical).

Biosample repository

Maintain national linked repository for biological samples linked to the national health administrative database, biofluid samples for collaborative linked studies (current and future), and tissue samples of varying phenotypes of endometriosis

Further research

Report and publish results from funded projects and identify further priority areas of research

View Progress Report prepared for National Action Plan for Endometriosis Implementation Committee