CCReW News 10Oct23- Australia

Our big news is that we launched a shop. When you can't work, you start to think about how efforts like this can be made more sustainable. The shop aims to provide products that serve as a win-win to both the purchaser, and our mission to support and advocate for the CCReW.

There are currently two categories of products. The CCReW Believers category provides options for the individuals and organisations that want to generically help us support the CCReW. The Origami 4 Clinical Trials category has the specific purpose of gifting thankyou's in the form of an Origami Sunflower to clinical trial participants. Our blog shares why we think Origami Sunflowers are a good fit for this purpose. If you or your organisation is looking for a mindfulness or team building activity with purpose, or you just want to say thankyou to a clinical trial participant, I do hope you will shop now.

And, as an added incentive to jump in and shop during October, we have launched our first (hopefully annual) October O4CT CCReW Support Campaign and Challenge. The individuals and organisations that purchase the most in each category will be named O4CT Champions and awarded a trophy for their efforts. Let's see who is the most committed to supporting CCReW this month!

On a separate note, we've been involved in a number of great events over the past couple of months, discussing diversity and patient partner experiences. If you missed the PxP conference, then I'd definitely check out the PxP Hub resources for their recordings. I'm looking forward to re-listening to the treasure trove of insights shared by patient partners during the session I moderated on Day 3, once released. And I suspect there might be more from this team to come. And if there are topics that you think require more attention, I know the organisers are already thinking about PxP 2024 and are open to ideas, speakers, etc.

Finally it is World Mental Health Day. It is so important that we acknowledge the fluctuations that can occur in our mental health, and be kind to ourselves and others that may be going through times in need of support. Taking care of our minds and feelings is just as important as our physical health, if we are to start to combat the rising rates of depression, anxiety and more we are seeing in people of all ages, all walks of life. There is no shame in asking for help, rather its a strength to reach out when you need it. If you need to talk to someone, a few helplines are listed here.

So in wrapping up, I hope the next newsletter will not be as far away. in the meantime, I'd love for you to check out and purchase something in our shop, help spread the word and be in the running for October Challenge Champions Awards, creating sustainable support for CCReW. Here's wishing you keep well and life is kind to you until we meet again.

This is a list of all studies on the ANZCTR approved by a human research ethics committee, that opened to Australian participants since 1 Sep, as at 10 Oct 23. As we are playing catchup, we've changed the listing format to focus on the target population and location. Please click the link for full trial details.

Cancer treatement/screening

Comparing two body image writing interventions for targeting positive body image in female cancer survivors aged 18 years or older (ACT,NSW,NT,QLD,SA,TAS,WA,VIC).
LUMOS2: Low & Anaplastic Grade Glioma Umbrella Study of Molecular Guided TherapieS, for adults aged 18 years or older with glioma of a specific grade and type (NSW,QLD,TAS,VIC).
Study to evaluate the safety, tolerability, pharmacokinetics, pharmacodynamics, and preliminary clinical activity of ES009 administered intravenously to people aged 18 years or older with locally advanced or metastatic solid tumours (VIC, NSW, QLD).
A Study Investigating BGB-26808 Alone or in Combination With Tislelizumab in people aged 18 years or older with advanced, metastatic and unresectable solid tumours (SA, WA).
A Study to Investigate the Biological Effects of AZD5305 Alone, Darolutamide Alone, and in Combination Given Prior to Radical Prostatectomy in Men aged 18 years or older with Newly Diagnosed Prostate Cancer (VIC).
A Phase 1 Study to evaluate INCA033989 administered as a monotherapy or in combination with Ruxolitinib in people aged 18 years or older with Myeloproliferative Neoplasms (QLD, SA, VIC).
Phase 1/2a trial to evaluate the safety and tolerability of DB-1311 in people aged 18 years or older with advanced/metastatic solid tumors (NSW, WA).
A Phase 1 dose escalation trial of IKS014 in people aged 18 years or older With Advanced HER2+ Solid Tumors (NSW, VIC, WA).
A Phase 2 study of genetically risk-stratified Venetoclax, Ibrutinib, Rituximab (± Navitoclax) in people aged 18 years or older with Relapsed/Refractory Mantle Cell Lymphoma (QLD, SA, VIC).
A Phase 1 dose-escalation study of PRT2527 in people aged 18 years or older with select relapsed or refractory (R/R) hematologic malignancies including aggressive B-cell lymphoma subtypes, mantle cell lymphoma (MCL), and chronic lymphocytic leukemia (CLL)/small lymphocytic lymphoma (SLL), including Richter's syndrome and T-cell lymphoma (TCL) subtypes (VIC, WA).
A first-in-human study to evaluate IKS03 in patients aged 18 years or older with advanced B cell non-Hodgkin lymphoma (WA).
Screening participant and health service impact of population-based breast density notification in Australia, for women aged 40 years or older attending BreastScreen Queensland (at locations in Sunshine Coast Hospital and Health Service, QLD).

Mental Health

Piloting a new mental health intervention for rural young people (16-18 years) who have been exposed to a natural disaster (NSW).
CogScreen: Validating cognitive screening in young people aged 12-25 years with first-episode psychosis (NSW,SA,VIC).
A Phase 2 study of a single dose of BPL-003 combined with psychological support in patients aged 18-75 years with treatment resistant depression (NSW).
Deep Brain Stimulation for people aged 20-55 years with treatment-refractory Obsessive-Compulsive Disorder (ACT,NSW,NT,QLD,SA,TAS,WA,VIC).

Healthy Volunteers

Characterising the effects of a Moderate CYP3A4 and P-glycoprotein Inhibitor on the impact of Bomedemstat (IMG-7289) in healthy volunteers (18-65 years) (SA).
A comparison of cannabis medicines containing Cannabidiol (CBD) in healthy males (aged 18-40 years) (NSW).
A Study to Evaluate the Safety, Tolerability, Pharmacokinetics, and Food Effect of GT-02287 in Healthy Participants aged 18-65 years (SA).
The First-in-human Study of SRN-001 in Healthy Participants aged 18-60 years (SA).
A Phase I study to assess bioavailability, bioequivalence and tolerability of IHL-42X compared to the reference drugs in healthy volunteers aged 18-65 years (SA).
A study of the psychological, cognitive and physiological effects of Psychedelic Medicines on healthy individuals aged 21-70 years (NSW, VIC).

Other

Point-of-care hepatitis C antibody and RNA testing for screening individuals aged 18 years or older completing a community correction order (VIC).
Comparing Cognitive Behaviour Therapy and Guided Self-Help in the Treatment of people aged 18 years or older with disordered eating (VIC).
The impacts of a single session educational chatbot on people on waitlists for eating disorder treatment, aged 16 years or older (NSW,QLD,SA,WA,VIC).
An observational study to assess whether piezo-ICSI (intracytoplasmic sperm injection) a viable alternative for patients with previous poor fertilisation results (VIC).
Feasibility study of Healthy Dads, Healthy Mob: biya yadha gudjagang yadha for Aboriginal father/father figures and their children (5-12 years old) living on Darkinjung Country to optimise cardiovascular health (NSW).
A parent support program for parents of autistic children (10 years and younger) (ACT,NSW,NT,QLD,SA,TAS,WA,VIC).
A pilot randomised controlled trial of a digital atrial fibrillation (AF) education program for people aged 18 years or older living with Atrial Fibrillation (NSW).
A pilot study of vitamin supplementation in people aged 18 years or older following diabetes-related minor amputation of the lower limb (WA).
Bringing Namaste Care to people aged 50 years or older with advanced dementia at end of life in residential aged care services (TAS).
Low Glycaemic Load Breakfast versus a Traditional High Glycaemic Load Breakfast for the management of Gestational Diabetes Mellitus in women aged 18-40 years (NSW).
Partner-treatment study for monogamous couples who are in the LGBTQIA+ community, where one person has bacterial vaginosis (ACT,NSW,NT,QLD,SA,TAS,WA,VIC).
Managing Delirium with FLUvoxamine treatment in elective non-cardiac, non-intracranial surgical patients who are 60 years or older (NSW).
A Study to Evaluate the Efficacy, Safety, and Tolerability of BMS-986278 in people aged 40 years or older with Idiopathic Pulmonary Fibrosis (NSW, QLD, SA, VIC, WA).
A Study Evaluating the Application of Hearing Aid Technologies to Signal Processing for Adult Cochlear Implant Recipients aged 18 years or older (NSW, VIC)

Please contact researchers directly through the listings as we have no connection/involvement with these studies. 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 (first listing of a study/event is free, repeat listings for a fee).

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

One of our Research Gamechangers is looking for a QLD-based health consumer with an interest in digital health to join the Australasian Institute of Digital Health's 2024 Health Informatics Conference Committee! HIC will be in Brisvegas, 5-7 August 2024. If you are interested, either drop into the Facebook group for more information ASAP, or email us and we will connect you up.
For the first time, Australian women are invited to share their experiences in the health system to better inform policy development and improve health outcomes for women and girls. An Australia-wide community consultation project has begun to understand the personal experiences of bias in the health system. Anyone can take part, including patients, health providers, researchers and other stakeholders. The survey closes 13 Oct.
Rare Cancers Australia is hosting its annual CanForum 17 Oct. If you can't make it to Canberra, you can join online. This year's event is focussing on the Genomics Revolution.
A-CTEC are hosting an online Symposium 19Oct: “Diversity and Equity in Clinical Trials”. You need to register as an A-TEC member (free to all) to access further information and register to attend the free event. You’ll spot me moderating one of the sessions!
The Australasian Institute of Digital Health have opened a consumer partner scholarship covering full conference registration and $150 for incidentals to attend their AI+ Care conference in Melbourne 22-23Nov. Applications close 23 Oct.
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 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:

Jeri Burtchell, known as one of the first clinical trial participant bloggers, shares her reflections in this interview on taking part in a trial and the pros and cons of sharing those experiences online.
Tasmanian Collaboration for Health Improvement Webinar 29Sep. This webinar showcased a range of research methods designed to include the voices of consumers and community.
Patient Engagement and Patient Experience Data in Regulatory Review and Health Technology Assessment: A Global Landscape Review publication. Sep23.
Learning from ‘lived expertise’: engaging athletes and patients in sport and exercise medicine research and policy. British Journal of Sports Medicine 2023;57:189-190. Grant review 101: The Basics of reviewing grant applications - Webinar and slides. Access at the bottom of this page.
Working effectively with public contributors - NIHR Applied Research Collaboration West. A nice list of links to UK-based resources.
Development of the Strengths, Skills, and Goals Matrix: a tool for facilitating strengths-based adolescent and young adult engagement in research. Res Involv Engage vol 9: article 89 (2023).
Youth and family involvement in the development of a plain language trial results communication tool: CommuniKIDS. Res Involv Engage vol 9: article 88 (2023).
Co-creation of a patient engagement strategy in cancer research funding. Res Involv Engage vol 9: article 86 (2023).
Co-producing principles to guide health research: an illustrative case study from an eating disorder research clinic. Res Involv Engage vol 9: article 84 (2023).
Recognizing patient partner contributions to health research: a systematic review of reported practices. Res Involv Engage vol 9: article 80 (2023).
Inclusive approaches to involvement of community groups in health research: the co-produced CHICO guidance. Res Involv Engage vol 9: article 76 (2023).
Toolkits mountain. The Patient Experience Library have mapped all the toolkits for patient and public involvement in research, so you know what you might want to use when!
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.