CCReW News 7Nov23- Australia

Dear

So the first O4CT CCReW Support Challenge has wrapped up. It was our first effort, and we look forward to building on it for next year, with a bit more notice. And so now I get the pleasure of announcing the winners of this years O4CT campaign. Drum roll please....

There was a tie for the CCReW Believer Individual Champion Award, and we are delighted to announce Carol Vleeskens and Jacqueline Lesage as the joint winners of the Award for this year.

Congratulations to Rhadika Butala, winner of the Origami 4 Clinical Trials Individual Champion Award.

And finally, congratulations to Grampions Health for winning the Origami 4 Clinical Trials Organisation Champion Award. To all the award winners, I will be sending out your awards by the end of the month.

I am so grateful for the individuals and organisations that took the leap of faith to purchase from our new shop during October, and we hope more will do so in the future. While the O4CT campaign is over, the shop remains open all year around as one of the ways to fund advocacy, recognition and practical support for the CCReW. Maybe think about whether your team might like to hold an Origami Sunflower workshop to relax whilst doing something purposeful for trial participants in the lead up to Christmas, or find out about the CCReW Believer Packages that can demonstrate your commitment to supporting thr people who take part in and partner in research, especially clinical trials.

Last newsletter I mentioned that the NSW ConViCTioN consumer group are seeking new members. Applications had closed 25 Oct, but due to there being fewer applicants than spots, the call for expressions of interest has reopened until Fri 10 Nov. Please consider applying if you live in NSW (especially outside metro areas) and have experience of trials as a participant or carer. For more information watch the invitation video and get more information (including the link to apply) in the description below the video. Please share this opportunity widely, and/or apply by Friday this week.

Finally, on 14 Dec, I'll be hosting the last ARCS Consumer Partnerships Interest Area meeting for the year. Given it is right before Christmas, I thought it would be a good time to reflect on caring for consumer partners and self-care for consumer partners. It's been a very busy year for everyone, and its time to think about refueling those batteries and good practices for 2024. I'm actively looking for consumers interested in sharing your thoughts on this topic, so please drop me a line as soon as possible if interested. And I'll let everyone know how to register to attend the webinar in the next newsletter.

I will leave you now to catch up with the events and opportunities below. So until next time, here's wishing you well and that life is kind to you.

This is a list of all studies on the ANZCTR approved by a human research ethics committee, that opened to Australian participants since 23 Oct 23, as at 6 Nov 23. We've highlight the broad population that studies are looking for, and where, so please click the link for full trial details and eligibility.

Cancer

An early phase clinical trial to measure the safe dose of a new alpha-radiopharmaceutical for the treatment of males aged 18 years or older with advanced prostate cancer (QLD).
A global phase 2/3 open-label study of human leukocyte antigen (HLA)-A*02:01 negative people aged 18 years or older with metastatic uveal melanoma who will be randomized to receive either IDE196 + crizotinib or investigator's choice of treatment (pembrolizumab, ipilimumab + nivolumab, or dacarbazine) (NSW, QLD, VIC, WA).

Healthy Volunteer

An open-label pilot study investigating the safety, feasibility, and tolerability of photo-biomodulation Therapy (PBMT) on healthy participants aged 50 to 70 years (QLD).
A Phase I/IIa Study to Assess the Safety, Tolerability and Explore the Immunogenicity of EG-COVII (a bivalent vaccine to prevent SARS-CoV-2 infection) in Healthy Adult Volunteers (VIC).

Other

Examining whether education will improve cardiovascular health in women aged 18 years or over with a recent pregnancy and a diagnosis of pre eclampsia & gestational hypertension (VIC).
A study to evaluate the effectiveness of a multi-strain probiotic intervention provided together with dietary anthocyanins extracted from the New Zealand Blackcurrants on the gut microbiota profile and inflammatory biomarkers in adults with mild-moderate Ulcerative Colitis (ACT, NSW, NT, QLD, SA, TAS, WA, VIC).
A study to assess the use of nasogastric tubes in adult patients with adhesive small bowel obstruction in patients with a history of abdominal surgery for prevention of operative intervention (Newcastle, NSW).
A study investigating the safety and efficacy of an ultra-fast acting insulin in an open source automated insulin delivery system without manual mealtime boluses (Android Artificial Pancreas System), in people aged 18-70 years with type 1 diabetes (VIC).
An extension study to assess the long-term safety and efficacy of Ianalumab in people aged 18-75 years with Sjogrens Syndrome who have participated in either one of the two NEPTUNUS core studies (TAS).

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:

The Australian Commission for Safety and Quality in Healthcare's National Medicines Symposium 2023 will be held online 8 Nov. Register free online.
Mobilising research knowledge with members of the public: the challenges and opportunities. NIHR Webinar 9 Nov. Register online.
ConViCTioN NSW are looking for new NSW consumer members with an interest in helping develop initiatives to support awareness and participation in clinical trials. Learn more here. Apply by 10 Nov.
The Centre for Culture, Ethnicity and Health is holding a webinar 15 Nov 12-12.30pm AEDT that might be of interest to research professionals aiming to engage more non-English speaking people in their research. This webinar will focus on the actual communication via an interpreter, not the briefing and debriefing stages. You will hear about what enhances and undermines good communication. Register online.
Expressions of interest and registrations are now open for the Health Issues Centre’s Victorian Health Consumer Engagement Leadership Programs or Consumer Partners Mentoring Program. More information on the program structures is available here. Register for an information session on these programs with HIC CEO Alison Coughlan on Wednesday 15 Nov at 12:30pm.
The Department of Education is coordinating the development of a strategy for Australia’s National Digital Research Infrastructure (NDRI) as part of the 2021 National Research Infrastructure Roadmap. Public consultation on the draft NDRI strategy closes on Monday 20 Nov 10am AEDT.
The BEAT-CKD Centre of Research Excellence - Partnering with Patients with Chronic Kidney Disease to Transform Care and Outcomes (CRE-PACT) is holding End of Year Forum on 20 Nov. Attend online or in-person in Brisbane, Sydney or Adelaide. It’s free! Register online
ACTA will be hosting an engaging webinar that delves into the world of teletrials, to be held on Tuesday 21 Nov, 3pm AEDT. Register online.
The Living Evidence for Australian Pregnancy and Postnatal Care (LEAPP) consortium is seeking NHMRC approval for new Australian Pregnancy and Postnatal Care Guidelines. Consultation for the first guideline module is now open until late Nov. View the module and make a submission online. Find out more about the five-year Australian Pregnancy and Postnatal Care Living Guidelines project on the LEAPP Guidelines’ website.
The National HREC Conference 2023 will be held online 29Nov-1Dec. Register free online.
The Garvan Institute (Sydney) are holding a public seminar 8 Dec 10.30am-12pm: A year in review, reflecting on some of the research highlights and breakthroughs of 2023. Register for online or in-person attendance.
Researchers at Flinders University are conducting a couple of quick surveys re: Acknowledging the Contributions of People with Lived Experience in Research Outputs. Survey 1 is seeking feedback from people who have contributed as someone with lived experience to research. Survey 2 is seeking feedback from researchers who have worked with someone with lived experience. For more information or to ask a question, please contact: Sarah Eley, Senior Project Officer - Capacity Building, T: 08 8128 4031 or E: Sarah.Eley@healthtranslationsa.org.au
We all know participation information sheets and consent forms for clinical trials need improving. Provide your feedback on the beta-testing versions of a new potential Australian template, developed through a CT:IQ project, available at www.informedpicf.com.au. Consultation is open until the end of the year.

CT:IQ is currently asking for feedback from researchers about how they communicate wtih their trial participants throughout the research, and feedback from consumers about their experiences of communication in trials. As we are part of this project, we really encourage you to participate so what matters to you as trial participants gets recorded.

Here's some other news and resources you might be interested in:

The Australian Commission of Safety and Quality in Healthcare have released a new guide: Partnering with Consumers: A guide for consumers
A systematic review of models of patient engagement in the development and life cycle management of medicines. Drug Discovery Today, Sep23
World Cafés as a participatory approach to understanding research agendas in primary care with underserved communities: reflections, challenges and lessons learned. Res Involv Engage Oct23
The value of co-creating a clinical outcome assessment strategy for clinical trial research: process and lessons learnt. Res Involv Engage Oct23
Patient engagement in health implementation research: A logic model. Health Expectations Oct 23.
OECD Health Working Papers No.159: Patient Engagement For Patient Safety - The why, what, and how of patient engagement for improving patient safety. Sep23
Barriers and Motivators Impacting Patient Engagement in Research. IQVIA Blog Sep 23.
Compelling New Models for Patient Engagement and Trial Participation - closing plenary day 1 of the RARE Advocacy Summit, Sep 23 in San Diego, California
Evaluating a patient engagement program within a national research network. Alz & Dementia, Jun23
AccessCR's clinical trials jargon buster and Knowledge page for information and support around clinical trials basics, asking your doctor about trials, helping clinicians with information on trials and more. We also have a list of some resources for involving consumers in research.