Latest updates

The three patient community representatives who will be members of the NECST Network Strategic Governance Committee are:

• Lesley Freedman (EndoActive, NSW)
• Jessica Taylor (ACE and Qendo, QLD)
• Megan Thomson (VIC)

Following a national call out for nominations to these positions, the Committee voted to appoint these three representatives from a pool of 20 nominations.

The NECST Network has submitted an application to become a full member of the Australian Clinical Trials Alliance (ACTA). ACTA is the national peak advisory body that was formed to advance the common and shared interests of clinical trials networks, clinical trial coordinating centres and clinical quality registries across discipline and disease boundaries. Their mission is to promote effective and cost-effective healthcare in Australia through investigator-initiated clinical trials and clinical quality registries that generate evidence to support decisions made by health practitioners, policymakers and consumers.

The NECST Network is keen to be informed of any trials occurring in the area of endometriosis. Help in recruitment of participants will be offered through Jean Hailes social media posts if appropriate and included in NECST Network updates to keep the community of researchers, clinicians and others interested in endometriosis research informed. Please email Rachel Mudge rachel.mudge@jeanhailes.org.au with details of your trial and evidence of ethics approval.

The University of Tasmania is conducting research into the effectiveness of cognitive behavioural therapy (CBT) and mindfulness in managing the distress and pain of endometriosis. Women around Australia diagnosed with endometriosis are invited to take part in this free eight-session trial. To find out more about the treatment, contact Dr Leesa Van Niekerk on (03) 6226 6645 or leesa.vanniekerk@utas.edu.au.

The first progress report was submitted in January to the Australian Government for the MRFF NECST Network Grant. Following is an excerpt from the report detailing the activities completed during the reporting period (1 June 2018 – 31 December 2018) and outcomes:

The NECST Network has been in the establishment phase during this reporting period. The first milestone (1), "Establishment of the Clinical Trials Network (CTN)", was defined as being achieved when scientific and clinical research communities with interest, experience and expertise relevant to endometriosis have established a research network and facilitated the necessary infrastructure to support national multi-centre trials. We are tracking well with this milestone, however it will now likely be completed by 30/06/19.

As defined in the project management outline in our MRFF grant application, the goals for the establishment phase are:

1. Project Governance: establish national project oversight committee and chair with agreed project governance framework.
2. Project Management: Identify and engage project manager. Develop detailed arrangements to support research active clinicians and scientists and develop call for applications.
3. Australian Longitudinal Study of Women's Health (ALSWH) analysis: Engage ALSWH fellow and start analysis.

The outcomes achieved to date are:

1. Project Governance: we have established a Strategic Governance Committee chaired by Prof Kate Leslie AO FAHMS, with members from the research community (Prof Louise Hull and Ms Melissa Parker), a RANZCOG nominee (Dr Vijay Roach, current President of RANZCOG), patient community representatives (Ms Jessica Taylor, Ms Lesley Freedman and Ms Megan Thomson) and Jean Hailes management (Mr David Lloyd and Dr Rachel Mudge). The purpose of this committee is to oversee the activities of the NECST Network, ensuring that the funding is managed and acquitted in accordance with MRFF Funding Principles and with research governance best practice. They will also review and approve funding decisions on allocation of funding to specific activities, in light of the grant's project plan and MRFF funding principles.
2. Project Management: we have appointed a NECST Clinical Trial Manager (Dr Cecilia Ng) to co-ordinate the set-up of the network including databases, biobanks and membership. We have also established the Executive Committee for NECST in order to develop detailed arrangements to support researchers and the framework for the network. The members of the Executive Committee are Prof Jason Abbott (Chair), Prof Gita Mishra, Prof Grant Montgomery, Prof Peter Rogers, Mr David Lloyd, Dr Rachel Mudge and Dr Cecilia Ng. The committee is organising a meeting of research active clinicians and scientists to establish agreed protocols, databases, a clinical trial framework, ethics protocols and network membership in the second quarter of 2019.
3. ALSWH analysis: An ALSWH fellow, Dr Ingrid Rowlands commenced in December 2018 and has been engaged to start analysis of endometriosis data in the ALSWH.

Progress against Milestone (2), "Collection of baseline data on burden of disease", has commenced. Dr Ingrid Rowlands has started analysis to in order to identify the prevalence and incidence of endometriosis according to the ALSWH.

Progress against Milestone (3), "Establishment of the core national patient database and clinical sample repository", has begun. The set-up of the database and repository is a complex task with many stakeholders with multiple ethics, procedure and process issues involved. Working groups consisting of expert clinicians and scientists are being established to reach a consensus regarding best practice for the framework and network of NECST. These groups will meet in Quarter 2 of 2019 to determine best practice resulting in establishment of the framework and network after consultation with experts in the field.

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 University of Tasmania is conducting research into the effectiveness of cognitive behavioural therapy (CBT) and mindfulness in managing the distress and pain of endometriosis. Women around Australia diagnosed with endometriosis are invited to take part in this free eight-session trial. To find out more about the treatment, contact Dr Leesa Van Niekerk on (03) 6226 6645 or leesa.vanniekerk@utas.edu.au.

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.