Targeted Call for Research into Debilitating Symptom Complexes Attributed to Ticks

The Australian Government recognises the need for research into debilitating conditions attributed to ticks, including Lyme-like illnesses. 

In April 2017, the Minister for Health, the Hon Greg Hunt MP, asked the NHMRC’s CEO to fast-track a Targeted Call for Research (TCR) into Lyme-like illnesses in Australia, with funding of up to $3 million.  A TCR is a one-time solicitation for grant applications to address a specific health issue. 

The Australian Government, through the Department of Health, has proposed alternative nomenclature to describe the heterogeneous nature of the debilitating symptom subgroups with acknowledgement that ticks may have a role – “Debilitating Symptom Complexes Attributed to Ticks”.

Advisory Committee for Research into Debilitating Symptom Complexes Attributed to Ticks

The Advisory Committee for Research into Debilitating Symptoms Complexes Attributed to Ticks assisted with the background work required in setting up the TCR. In particular, the Advisory Committee helped to define the research question of the TCR in a way that will make the best use of the available funds. It helped to pinpoint that research will be in scope of the TCR and provide contextual information on the background, aims and desired outcomes of the TCR. 

Membership

The Advisory Group includes a range of scientific experts, including infectious disease physicians, and a consumer representative.

Note:

NHMRC has well defined procedures for the formation of advisory panels which are based on obtaining the best experts available while ensuring conflicts of interest (real and perceived) are managed appropriately.

NHMRC does not allow people to apply to a TCR if they have assisted with the development of the research question or associated policies of that TCR. This requirement has been taken into consideration when identifying potential Advisory Committee members.

The Advisory Committee will not review the research applications that will be submitted to the TCR.  That role will be performed by a separate peer review committee of scientific experts.  However, members of the Advisory Committee may be invited to participate in the peer review assessment process for the TCR, if required at the time.

Progress Update

The first meeting of the Advisory Committee was held on 1 August 2017.

The Advisory Committee the following information as part of its deliberations: 

• The two proposals for a TCR from the Lyme Disease Association of Australia (LDAA) and the Karl McManus Foundation.
• The work of the Department of Health, in consultation with the Chief Medical Officer’s Clinical Advisory Committee on Lyme Disease and other clinical experts, to identify research projects that would assist in clarifying the Australian Lyme disease-like syndrome (refer to the Department of Health website)
• The reports of the Senate Standing Committee on Community Affairs on its inquiry “Growing evidence of an emerging tick-borne disease that causes a Lyme-like illness for many Australian patients” and the Government responses.

Mr Frank Hooke has been added to the membership of the Committee as an additional consumer representative.

The second meeting of the Advisory Committee, on 23 October 2017, received presentations from the Lyme Disease Association of Australia and the Karl McManus Foundation on what they considered to be the priorities for a TCR on DSCATT. Advisory Committee members then discussed the potential scope of the TCR and agreed to further deliberations out of session in preparation for the third meeting in February 2018.

The Government’s response to the Senate Standing Committee report was tabled on 15 November 2017.

In late 2017, the Reverend Dr Nikki Coleman advised the NHMRC that she was unable to continue as a member of the Advisory Committee. NHMRC appointed Ms Jacqui van Teulingen, a voluntary consultant to the LDAA, to give advice on the consumer perspective to the Advisory Committee.

The third meeting of the Advisory Committee was held on 28 February 2018. The Advisory Committee identified the aims, objectives, definition and scope and expected outcomes to be included in the Call Specific Rules for the TCR and agreed to finalise its advice to NHMRC out of session.

Terms of Reference

Under the National Health and Medical Research Council (NHMRC) Act 1992, the Advisory Committee for Debilitating Symptom Complexes Attributed to Ticks, reporting to NHMRC’s Chief Executive Officer, will:

1. Identify unmet need or significant research knowledge gaps and emerging issues in Debilitating Symptom Complexes Attributed to Ticks research, both in Australia and internationally.
2. Contribute to development of a specifically defined targeted call for research based on consideration of relevant TCR proposals and knowledge gaps. 
3. Contribute to the development of call-specific information including detailed background to the call, scope, aims and objectives and desired outcomes.
4. Perform other duties as directed by the NHMRC’s Chief Executive Officer.

Further Information

NHMRC has an online pathway for community and professional groups to propose ideas for health research topics, which NHMRC may develop into a TCR and invite grant applications. 

NHMRC has received proposals for a TCR into Lyme-like or tick borne disease:

• Lyme Disease Association of Australia (PDF 45KB)

• Karl McManus Foundation (PDF 86KB)

Applications for Funding under the TCR

Any applications for funding in response to the TCR will be assessed by peer review, with a panel established at the time for that purpose.  The process is underpinned by the NHMRC Principles of Peer Review, the NHMRC Guide to Peer Review and any Scheme Specific Peer Review Guidelines.

Anticipated timeline

Contact details

Queries about the work of the Advisory Committee should be directed to targeted.research@nhmrc.gov.au