CCReW News 24Oct23- Australia

Dear

How quickly 2 weeks rolls by. Today is Drop the Jargon Day and its a great reminder to any research and industry staff getting this newsletter, to 'Drop the Jargon'. A good place to start would be the lay titles and summaries on the ANZCTR or clinicaltrials.gov! This week I had to google medical terminology just to understand what a couple of the trials were about for the list below. Words matter if you want to capture the imagination and interest of the community, so do think about the language you use in communicating your research. I know I still don't get it right all the time, but I keep trying, and welcome feedback if I've messed up.

Its the last week of our October O4CT CCReW Support Campaign and Challenge and so I am keenly looking forward to seeing who will with the awards. It was also great to have one the CCReW share their experience of making their sunflower in our facebook group this week. What a fab job they did, even adding their own splash of imagination to the design. Congrats Deb! We'd love to see the handiwork of others as well, so don't be shy. This should also give you faith you can make them!

I've heard how burnt out many people are heading in to the last couple of months of the year. It's been quite the year for many of us. And so, taking some time out to do something a little crafty, perhaps with a group of friends, colleagues, over coffee or some other tipple of choice, could be just the ticket for re-filling those energy tanks in the lead up to Christmas. It's a perfect purposeful pre-Christmas party activity for your teams, together creating something that will be gifted to thank a trial participant for their contributions. Think of the hours participants sometimes spend attending trial visits... surely you have an hour you can give up to make them feel seen? And if craft isn't your thing, you can still purchase kits and we will make and deliver them for you.

So, if you want to support more CCReW to attend conferences, a clinical trials hotline, and other CCReW needs, why not see if there is something within your budget and interest in our shop. And as a bonus, purchasing the most during October will put you in the running for one of the CCReW O4CT Champion Awards!

In other news, I kicked myself when I realised I forgot to let you know last newsletter that the NSW ConViCTioN group are seeking new members, given applications close tomorrow! (Oct 25th). This is one of my favourite consumer groups to help support - so warm, friendly, networked, interested, engaged, and real doers. I'd really encourage any health consumers in NSW who have taken part in a clinical trial to consider joining for the next 9 months or so to help make progress on some initiatives to increase community awareness and participation in clinical trials. It's very much a consumer-led initiative. And if you are a clinical triallist, who has a participant you think would be great for it, please encourage them to apply, especially those living in rural and remote areas, or from groups typically underrepresented in clinical trials. 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 Wednesday!

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 10 Oct 23, as at 23 Oct 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 treatement/screening

A phase 3 study comparing Daratumumab, Bortezomib, Lenalidomide and Dexamethasone (DVRd) followed by Ciltacabtagene Autoleucel versus Daratumumab, Bortezomib, Lenalidomide and Dexamethasone (DVRd) followed by Autologous Stem Cell Transplant (ASCT) in people aged 18 years or older with newly diagnosed multiple myeloma who are transplant eligible. (SA, NSW, VIC, WA, QLD).

Heart Health

A phase 3, placebo-controlled study of the efficacy and safety of MK-0616, an oral medicine, in people aged 18 years or older with high cardiovascular risk. (NSW).

Other

The effect of mindful proprioceptive training on pain intensity for people aged 18-50 years with next pain for 3 months or longer. (VIC). And because we had to google it, we'd share what proprioception is - its the body awareness sense. It tells us where our body parts are without looking for them.
A study for the treatment of rosacea using a type of radiotherapy or standard dermatological treatment. This study is looking for people aged over 60 years with chronic, recurrent, moderate to severe rosacea for at least 10 years who have relapsed following certain treatments. (NSW).
A phase 2, open-label study to evaluate the safety, tolerability and efficacy of SAR442501 in children from birth up to 12 years of age with Achondroplasia (a disorder of bone growth). (VIC)
A phase 2 study of INBRX-101 Compared to Plasma-derived A1PI Therapy in people aged 18-80 years With Alpha-1 Antitrypsin Deficiency (AATD) Emphysema (QLD, SA, VIC)

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:

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 25 Oct.
Shared in our facecbook group were two opportunities for consumers reps to be involved as panellists in the ARCS Summit 22 Nov, or a SPHERE event for the School of Nursing and Midwifery. For more information, visit our Facebook group or drop me a line first thing, as I'll be send the list of potential volunteers for these roles to each requestor about 2pm on 25 Oct.
Webinar | Co-production with people living with dementia: A new way of working. 25 Oct 3.30pm UK time (26 Oct 1.30am AEDT)
2023 WCG Online Patient Forum 26 Oct, 3-6am AEST. Listen to the voices of patients, their families, caregivers, patient advocates, and health care professionals, sharing their trial experiences and stories regarding a range of issues in clinical trials.
The South Australian government’s Department for Health and Wellbeing is leading the development of SA’s first whole-of-system Health and Medical Research Strategy. Feedback is now sought on a Green paper about the strategy. Responses close 27 Oct.
If you live rurally in WA, NT or Victoria you may be of service in promoting clinical trials as a member of this PARTNER Network Community Advisory Group [CAG.] Expressions of interest close at the end of October. More details: https://partnernetwork.com.au/community-advisory-group
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.
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.
The National HREC Conference 2023 will be held online 29Nov-1Dec. Register free online.
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:

SCOPE Europe 2023: Finding the Magic in the Middle: Combining Patient, Site, and RWD Ingredients to Ignite Study Activation. Appl Clin Trials Oct23.
What is Co-Design? An overview. by KA Mercher, Beyond Sticky Notes. (You might also like to try out the link in the post to the Co-Design test, which will give you pause to think about whether the activities you are doing are really co-design).
NIHR guidance on co-producing a research project.
Different in so many ways: Exploring consumer, health service staff, and academic partnerships in a research advisory group through rapid ethnography. Aus J Occ Ther Jul 22 (I love that one of our Research Gamechangers was lead author in this research).
Developing a national strategy of consumer and community involvement (CCI) for women’s health research. Res Engage Involv Oct 23 (Australian work)
Hidden gems: a pilot project to solicit and reward patients’ and caregivers’ ideas for research. Res Engage Involv Oct 23
Involving patients in healthcare research is well documented but can it work in lab-based research? Res Engage Involv Oct 23
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.