CCReW Research News 24May24

Dear

For those of you who have participated in, partnered in or work in clinical trials, I hope you found a way to celebrate your contribution to advancing healthcare for all as part of International Clinical Trials Day on Monday. I celebrated at the start of the day by virtually attending the Hunter Medical Research Institute's clinical trials presentation. I finished the day attending the ACTA Trial of the Year Awards. It is always inspiring to hear about the research truly impactively patient lives for the better, not only introducing new innovations, but also removing care that is found not to work.

The Minister for Health, the Hon. Mark Butler MP reiterated the importance of clinical trials, the value of trial participants and the trials workfocrce, and the necessity for collaborating to remove the roadblocks that prevent timely and equitable access to trials. I couldn't agree more. Congratulations to all finalists, runners up and winners, but particularly to the Trial of the Year winner - the ASAP trial (who investigated antibiotic use in preventing infection in athroplasty), and the the ACTA Consumer Involvement Award winner - the ReCAPS trial team (which trialled a digital health self-management support package for adults with stroke discharged directly home from hospital).

In other news, last week was Budget week. You can catch up on key areas of Health spending in the Department's stakeholder pack. Like most of the sector, I was happy to see that there will be a $18.8million investment in progressing the 'One Stop Shop' for clinical trials and health research, and continued investment from the MRFF and NHMRC in our research and research workforce. I hope at some point in the future there will also be an investment in building the capacity in the 'consumer workforce' needed for research.

MTPConnect will be releasing their report next week updating on the status of clinical trials in Australia, the current challenges and opportunities. For a taster of what will be in that report, check out their teaser today. And in case you missed it, the NHMRC have (thankfully) extended the deadline on the consultation survey about the Community and Consumer Involvement Statement to the 16 June, so you have two more weeks up your sleeve to get your thoughts together. I really encourage as many individuals and organisations as possible to submit their views, to make sure the next Statement is as useful as possible for everyone in the research sector and community alike.

I'll be hosting a 'Clinical Trials Explained webinar today (24 May) at 12pm AEST. There'll be some slides, but importantly, plenty of time for questions in hopefully a safe environment (as it won't be recorded). So if you'd like to learn the very basics about what clinical trials are all about, who runs them, what you might want to know as a potential participant, or just have questions about the process, then please register by 10.45am AEST, so you get the link in time.

Fifteen of the 20 seats at the table for our Sydney CCReW meetup in Darling Harbour on the 13 June have been booked, so register as soon as possible if you'd like one of the last 5 seats. There's lots of new faces I've not met in person before, and I look forward to meeting you all.

Lastly, if you are heading to the ARCS conference in Sydney, say hello if you see me. I'll be attending the second and third days, and chairing a couple of sessions on the third day. I might be biased, but I think there will be some cracker insights shared for those interested in what patients want from clinical trials (session C17), and how hospitals are implementing the patient engagement aspects of the National Clinical Trials Governance Framework (session C23).

The following is a list of trials from ANZCTR listed as having started recruitment between 30 Apr - 23 May 2024 (as at 23 May). For more details, click on the links to access the specific trial information.

Cancer

A Phase 1/2 trial of T cells and pembrolizumab for recurrent and newly diagnosed glioblastoma, QLD, VIC.
A Phase 1 Study of IT STX-001 in Patients With Advanced Solid Tumors as Monotherapy or in Combination With Pembrolizumab, NSW.

Infections + Vaccines

The effect of access to point-of-care full blood examination testing on time to treatment for sepsis in Northern Territory primary health care settings NT.

Infant/Paediatric/Adolescent

Analysing High Dose Probiotic Peanut Oral Immunotherapy (PPOIT) and High Dose Peanut Oral Immunotherapy (OIT) Versus Low Dose Peanut OIT for Peanut Allergy, SA, VIC.

Healthy volunteers

A First-in-Human Study of Orally Administered 83-0060 to Evaluate Single and Multiple Ascending Doses of 83-0060 in Healthy Volunteers, NSW.
A First-in-Human Study of ZE50 0134 in Healthy Volunteers, NSW.
A Phase 1, First-into-human Study of NS-136 in Healthy Subjects, SA.

Other

A pilot of Zoely and Zoloft to treat Premenstrual Dysphoric Disorder, VIC.
OsteoAdapt SP Advanced Bone Graft Phase 1/2 Feasibility Study for Treatment of Symptomatic Degenerative Disease of The Lumbosacral Spine, SA.
A Study to assess the pharmacokinetic profile of the BRight drug-coated angioplasty balloon at different time points after the balloon deployment in treatment of the superficial femoral (SFA) and/or proximal popliteal artery (PPA). WA

We have no connection/involvement with these studies, so please open the links to get the contact details for the study. If the trial is not running near you, ask the researchers if there are other options or travel support available. We'd love to know if you make enquiries and join one of these studies.

If you are a sponsor or researcher that wants to let people know about your newly opened study, please complete our request form or contact us (it's free to list a trial once).

The following are some upcoming opportunities and events spotted that may be of interest:

Learn more about clinical trials at our 'Clinical Trials Explained' webinar, 24 May 12-1pm.
Participate in the National Consumer and Community Involvement in Healthcare and Research Survey let by AHRA. Closes 24 May.
Attend a webinar on the HeSANDA program and its role in helping support the sharing of clinical trial data for secondary use, hosted by Sydney Health Partners and the NHMRC Clinical Trials Centre (USyd). 28 May 3pm (online).
Participate in the next A-CTEC webinar - Inclusion of pregnant women in clinical trials. 6Jun 12.30-1.30pm. Log in to the A-CTEC platform to register.
Come along to our Sydney CCReW meet-up for dinner in Darling Harbour, 13 Jun. All consumers with an active interest in partnering research are welcome.
Complete the NHMRC consultation survey on the National statement on consumer and community involvement in research by 16Jun.
Attend Health Translation Queenslands Research Integrity Showcase, which will be highlighting critical intersections of ethics and research integrity in real-world protocols and authorship decisions. Register online. 26Jun, 11am-12pm.
Consider the CT:IQ Request for expressions of interest from consumers to participate in an Advisory Committee for the CT:IQ/HeSANDA project on secondary sharing of clinical research data. There's more information in our FB group, or you can email us for more information. ASAP.

Here's a few other bits and pieces you might like to engage with:

Test your knowledge of clinical trials in this fun, 7 question quiz from The George Institute.
Join the discussion in our Facebook group here about whether or not 'thankyou' cards are appropriate for/appreciated by all trial participants
Check out Bellberry's newly released Clinical Trial Activity Report 2023. Bellberry approve 43% of Australia's trials run under the TGA's clinical trial notification (CTN) scheme!
Catch up on the outputs from Day 1 and Day 2 of the WHO Symposium on Meaningful Engagement of people living with non-communicable diseases, mental health and neurological conditions May 15-16, or review the WHO framework for meaningful engagment of those communities.
Watch the video produced by Alfred Health's TrialHub where the Australian voice of Siri asks questions about clinical trials, that community and researchers answer. It's a cute flip of the role of Siri.
Review the recommendations made by Involve Australia to funders and research insitutions on how they could better support consumer involvement in genomics research. If you are a member of our Facebook group, let us know what you think about them on the post here.
Settle into a comfy space for some light(ish) reading:

the value of patient preference information in designing studies and making a case to regulators and funders. (Q&A piece).
What are the strengths and limitations to utilising creative methods in public and patient involvement in health and social care research? A qualitative systematic review. Res Involv Engage May 2024
Community-based participatory-research through co-design: supporting collaboration from all sides of disability . Res Involv Engage May 2024
NIHR Race Equality Framework: development of a tool for addressing racial equality in public involvement Res Involv Engage May 2024
Experiences of participant and public involvement in an international randomized controlled trial for people living with dementia and their informal caregivers. Res Involv Engage May 2024
Measuring the Impact of Patient Engagement in Health Research: An Exploratory Study Using Multiple Survey Tools J Can Assoc Gastroent Dec 2023
LabPartners: Championing Patient Engagement at the Bench Canadian Stem Cell Network May 2024
Should we stop using the word ‘stakeholder’ in research? May 2024
NIHR report: The hidden costs of patient and public involvement: a necessary conversation Apr 2024
Patient authorship of medical research publications: An evolution, revolution , and solution? Wiley Apr 24
Assessing early feasibility of a novel innovation to increase consumer partnership capability within an Australian health innovation organisation using a mixed-method approach BMJ Open May 2024