CCReW Clinical Trial/Research News 6Dec22

Dear

Who's happy we are nearly at the end of the year? I know I am. After a busy November, I am looking forward to taking a step back and thinking about/preparing for 2023.

I am regularly asked for lots of free advice, information, checklists, toolkits, templates etc to support consumer engagement, participation and involvement in research. These requests for a free chat, a presentation, a documen, etc absorbs alot of time which has become unsustainable for me. So to save some time, alongside the resource that is our Facebook group, I've now collated a number of resources I think are useful for supporting consumer involvement and added them as a standalone page on the knowledge section of the AccessCR website.

Advocacy around consumer involvement in conferences continues, and it was great to see Creaky Joints' publish their thoughts on the subject in Rheumatology Republic this past week. Stay tuned for an announcement in our next newsletter opening the next conference scholarship round.

I'm keeping it short this newsletter, but do invite you to check out the trials recently opened, and opportunities, events and resources listed below. And if you ever want to catch up on past newsletters, you can do so on the CCReW website.

Stay sane and safe as you start to roll into Christmas celebrations, and may the world be kind to you.

Janelle.

AccessCR and the CCReW initiative

This is a list of all studies on the ANZCTR approved by a human research ethics committee, recruiting in Australia, with a trial start date between 21Nov -5Dec22 not previously listed here, as at 5Dec22.

Clinical Trial assessing the safety and feasibility of major soft tissue abdominal resections using the da Vinci Xi surgical robot. This non-randomised, open label, single group trial running in Sydney is looking for 20 people aged 18years and over planning to undergo elective robotic multivisceral complete soft tissue extended resections for pelvic cancers.
A Phase 1 study to look at the safety of an intranasal formulation of an MRI contrast agent in healthy adults. This randomised-controlled, open label, diagnostic trial running in QLD is looking for about 12 healthy people aged 18-55 years.
Psychological Treatment of Posttraumatic Stress Disorder and Moral Injury in Refugees. This randomised controlled, open label, treatment trial running via Telehealth on Zoom is looking for 12 people from a refugee background anywhere in Australia who speak either Arabic, Dari, Farsi or English, a PTSD diagnosis, exposure to a potentially morally injurious experience with elevated trauma-related anger, shame or guilt.
Evaluating two doses of intravenous lidocaine infusion for relief of nerve-related pain that persists after trauma or surgery. This blinded, randomised, placebo-controlled Phase 2/3 trial running in Brisbane is looking for 40 people with a documented diagnosis of peripheral neuropathic pain after surgery or trauma for at least 6 weeks with moderate to high intensity.
A Study in People With Systemic Sclerosis to Test Whether BI 685509 Has an Effect on Lung Function and Other Systemic Sclerosis Symptoms. This international phase 2, randomised, placebo-controlled, double-blind trial running in NSW is looking for 200 people globally aged 18 years or older with active diffuse cutaneous systemic sclerosis that started in the last 5 years.
Study of the Long-Term Effectiveness of the Motiva Implants® Round and Round Ergonomix in Primary and Revision Breast Augmentation. This international, observational trial running in Sydney, ,Brisbane and Melbourne is looking for 160 cisgender women (any age) that underwent breast implant surgery at least 3 years ago using Motiva Implants® Round or Round Ergonomix®.

Please contact researchers directly through the listings as we have no connection/involvement with these studies. I'd be grateful if you can let me know if you do contact a researcher or join one of these trials so that we know whether these listings are helping people find trials.

If you are a researcher that wants to let people know about your recruiting trial, please contact us (first listing free, subsequent listings for a fee).

We love to hear your stories as trial participants, consumers involved in research or the carers and family that help support people do either. It helps us promote your good works, uncover areas for improvement, and inspire others as to what is possible. Feel free to catch up on stories already shared on our blog.

In the meantime, you might like to check out trial participant John's experience published by the Melanoma and Skin Cancer Trials Network.

Feel free to email us, give us a call, or share your story in any other way you'd like to with us.

The following are some upcoming activities spotted that may be of interest:

Victorian Comprehance Cancer Centre (VCCC) Alliance Consumer Engagement Forum 2022, Online 7 Dec 10am-12pm. Currently sold out, but there is a waitlist if you still want to register.
Monash Partners webinar - Learning Health Systems – The why, what, who and how to improve care delivery and quality by 2030. 8Dec 1-2.30pm.
Public consultation on the Mitochondrial Donation Supplementary Section to the Ethical guidelines on the use of assisted reproductive technology in clinical practice and research is open. Submissions close Mon 19 Dec 2022, 17:00 (AEDT).
The Inclusive Health Research awards have been established by Nature Awards in partnership with Takeda to celebrate those who are driving a more inclusive approach to health research and, in doing so, promote a future of greater health equity globally. Deadline 6 Jan 2023.
COPE, the Centre of Perinatal Excellence, has released a draft guideline on mental health care in the perinatal period for public consultation until Sat 7 Jan 2023.
The Australian Government Department of Health and Aged Care are seeking feedback to inform a National Dementia Action Plan. Closes 31Jan23.
University of Melbourne researchers are conducting a survey to find out what Australians diagnosed with cancer think about sharing human research data. Find out more here.

If you'd like to proactively advertise a consumer research involvement opportunity or event, then please get in touch for more information.

Here's a few resources (old and new) you might be interested in:

Co-production Collective (UK-based) - resources to support co-production.
Health Affairs Oct 2022: Excluding People with Disabilities from Clinical Research: Eligibility Criteria Lack Clarity and Justification.
Nature Medicine Oct 2022: Supported decision-making can advance clinical research participation for people with disabilities.
MTPConnect's Targetted translation research accelerator for diabetes and cardiovascular disease held a webinar last week on the principles of Aboriginal and Torres Strait Islander Health Research and engagin meaningfully with community. Catch up on the webinar here.
Monash Partners recently held a couple of webinars, the recordings of which are available by clicking on the links: "Better together - consumer and community involvement in research"; "Consumer and community involvement in clinical trials: exploring the nitty gritty of consumer advisory panels".
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. Check out our new webpage sharing resources for involving consumers in research.