CCReW Clinical Trial/Research News 31Jan23

Dear

Hi from me for the first time in 2023. I've taken most of January off to recharge the batteries and spend time with my family, which has been quite the luxury.

My main activity since the last Dec news has been promoting applications to the recent CCReW Support Scholarships round, which closed on the 22 Jan. With the help of two consumer colleagues independent to AccessCR reviewing applications and some jiggling of requests, 4 cancer survivors/advocates have been offered financial support to cover their travel, accomodation, registration fees and incidentals to attend the COSA Cancer Survivorship conference in Adelaide in March.

This round of scholarship recipients identify as 'scarce voices' at conferences in a number of ways, from indigenous to migrant backgrounds, from paediatric to youth and senior interests, to a cancer with few survivors. All said they could not have attended without this support, and so I am delighted to help facilitate their learning, networking and diverse experiences to be at the conference.

Sadly, I couldn't offer scholarships to everyone. As grateful as I am to all the sponsors for what was on offer, there is just never enough money to help everyone.

In the next couple of weeks I hope to finalise the last conference that CCReW Scholarships will be offered for, until I can do more fundraising. If you have any suggestions for a suitable conference or are interested in contributing to help fund future scholarships, please reach out as soon as possible.

As always, I'll finish off wishing the world is kind to you until we meet again.

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 1-30Jan23 not previously listed here, as at 30Jan23.

Evaluation of different approaches to helping people get more out of therapy for non-underweight eating disorders. This open, randomised controlled treatment trial running in Adelaide is looking for 86 people aged 15 year of older with a BMI greater than or equal to 18.5 and an eating disorder diagnosis.
The effect of an acute bout of isometric exercise on pain sensitivity in adults aged 18 to 55 with chronic low back pain: a randomised crossover trial. This blinded, randomised controlled, crossover treatment trial running in Victoria is looking for 30 people aged 18-55 years with non-specific chronic low back pain persisting for more than three months, without known specific pathology.
Does the addition of high-intensity single muscle group training improve exercise training efficiency in heart failure? This blinded, randomised controlled treatment trial running in QLD is looking for 70 people aged 18 or older with a diagnosis of heart failure, clinically stable and suitable to participate in an exercise program.
Effect of single dose anthocyanins on lung hyper-responsiveness in adults aged 18 to 55 suffering from exercise-induced bronchoconstriction. This blinded, randomised controlled, crossover treatment trial running in QLD is looking for 20 healthy non-smokers aged 18-55 years with physician-diagnosed exercise-induced bronchoconstriction.
First in human clinical study of a novel drug PTC607 to assess its safety and tolerability in healthy volunteers. This blinded, randomised controlled, Phase 1 safety trial running in Adelaide is looking for 40 generally healthy people aged 18-65 years.
Are physiotherapy treatments feasible for patients with low oxygen levels after surgery? This blinded, randomised controlled pilot prevention trial running in Brisbane is looking for 50 people aged 18years or older having had major elective or non-elective abdominal surgery, and low oxygen levels when breathing themselves after removal of a tube from the throat post surgery.
Testing the efficacy of two sacral dressings in preventing pressure injuries(z) in adult intensive care population: TOWARDS ZERO pilot study. This blinded, randomised controlled pilot prevention trial running at the Gold Coast University Hospital QLD is looking for 80 people aged 18 years or older recruited within 24 hours of intensive care unit admission, expected to be there more than 24hours, and assessed as a high pressure injury risk.
The use of MRI guided focused ultrasound for the management of focal hand dystonia. This non-randomised controlled treatment trial running in Sydney is looking for 10 people aged 18years or older diagnosed by a neurologist with focal hand dystonia for whom first line therapies have not worked.
The effects of light therapy on daytime sleepiness, fatigue, occupational outcomes and quality of life in individuals following traumatic brain injury. This blinded, randomised controlled, treatment trial running in Perth is looking for 58 people aged 18-85 years with mild or moderate traumatic brain injury, and specific levels of fatigue and cognitive function.
Combining Sodium Valproate With Standard-of-care EGFR (Epidermal Growth Factor Receptor) Monoclonal Antibody Treatment in Patients With Metastatic Colorectal Cancer. This open, randomised controlled, Phase 2 treatment trial running in NSW, VIC and SA is looking for 90 people aged 18 years or older with metastatic colorectal cancer that is being treated with non-curative intent, RAS wild type status and suitable for the maintenance treatments proposed, along with a range of other criteria.
Prospective, Open-Label Study to Evaluate Subject's Satisfaction With the Aesthetics of the Periorbital Area After Treatment of the Upper and/or Mid Face With JUVÉDERM® Fillers and BOTOX®/VISTABEL®. This international, open-label, single group, Phase 4 treatment trial is looking for 80 people aged 40-65years in VIC and WA dissatisfied with their eyes and needing treatment in at least 2 areas on the upper and/or mid face with a least two of the JUVEDERM products.
A Study to Evaluate Effectiveness and Safety of Deucravacitinib (BMS-986165) Compared With Placebo in Participants With Active Systemic Lupus Erythematosus (POETYK SLE-2). This international, Phase 3, randomised, double-blind, placebo-controlled treatment trial running in QLD is looking for 490 people globally aged 18-75 years diagnosed with Systemic Lupus Erythematosus at least 24 weeks before the screening visit and a range of other criteria.
A Phase 3, Randomized, Open-Label Study to Evaluate Safety and Efficacy of Epcoritamab in Combination With R-CHOP Compared to R-CHOP in Subjects With Newly Diagnosed Diffuse Large B-Cell Lymphoma (DLBCL). This international, Phase 3, open-label, randomised-controlled treatment trial running in NSW, SA, VIC and WA is looking for 900 people globally aged 18-79 years with newly diagnosed, histologically confirmed CD20+ diffuse large b-cell Lymphoma planning to receive treatment with 6 cycles of standard rituximab, cyclophosphamide, doxorubicin hydrochloride, vincristine, and prednisone (R-CHOP) plus a range of other criteria.
The National Australian HCV Point-of-Care Testing Program: An Observational Cohort Study to Evaluate the Use of Finger-stick Point-of-care Hepatitis C Testing to Enhance Diagnosis and Treatment of HCV Infection - Minimal Dataset. This observational diagnostic trial running in NSW, and QLD is looking for 40,000 people aged 18 years or older receiving point-of-care HCV testing.

Please contact researchers directly through the listings as we have no connection/involvement with these studies. If you do contact a researcher or join one of these trials please drop us a note so I know whether providing this listing is useful and helping people find trials.

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

Given the recent CCReW Scholarship recipients are cancer survivors, this newsletter I am sharing a link to stories from cancer survivors sharing how research is transforming patient care and saving lives, from the American Association for Cancer Research.

We are always looking for stories to share on our blog and socials from trial participants, consumers involved in research or the carers and family that help support people do either, or researcher involving consumers in their work. If you'd like to share yours, please get in touch. And, feel free to catch up with stories already shared on our blog or Facebook Page.

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

The Australian Government Department of Health and Aged Care are seeking feedback to inform a National Dementia Action Plan. Closes 31Jan23.
Free webinar about the Sep22 CIOMS Working Group XI Consensus report on Patient involvement in the development, regulation and safe use of medicines will be held 31Jan23, 6pm* - 7.10pm SGT.
Have you, or a loved one, experienced persistent pain after surgery? Then ANZCA Clinical Trials Network need your help to design a new clinical trial. For more information, check out this tweet and then follow the link provided to register.
Consumers in Research – Meet, Mingle and Learn: An event for consumers, led by consumers. You are invited to take part in a unique forum bringing together consumers interested in giving the community a bigger and more effective voice in health and medical research. To be held at the University of Sydney 15Feb23, 10am - 3pm.
VCCC - 2 part online workshop: Consumers as active partners in research. Cost $50-$100. Runs 23Feb + 2Mar23, 12-2pm.
Free webinar (and potentially in-person pending COVID) - Join us to hear from consumers and researchers in Wouth Western Sydney on their experience in co-designing research to achieve
the best outcomes for patients and the community. 28Feb23, 12.30-2pm.
Learn about Medical Research Future Fund (MRFF) grant assessment processes at the next MRFF webinar - 15Mar23, 2pm (AEDT). (Watch previious MRFF webinars here)
Interested in getting MRFF Newsletters? Sign up here.
ARCS are inviting applications from consumers interested in free registration to their annual conference, 6-8Jun in Sydney. Learn more and apply here. Deadline for applications: 14Apr23

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:

New report on involving patients and members of the public in COVID-19 research - UK COVID Vaccine Research Hub, 12Dec22
Using Patient Perspectives to Inform Better Clinical Trial Design and Conduct: Current Trends and Future Directions - Review article, Pharmaceutical Medicine 18Jan2023
Research Ethics Review of Patient-Oriented Research: Perspectives of Researchers and Research Ethics Boards - PrePrint article
WECAN training module on “Patients in Publications” - four open-access online training modules on patient involvement in publications.
Patient-Led Research Scorecards. Developed in the US by The Council of Medical Specialty Societies (CMSS) and Patient-Led Research Collaborative (PLRC), these scorecards serve to evaluate how effective a patient group and research partner collaboration will be at conducting truly patient-led research.
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 latest webpage sharing resources for involving consumers in research.

The primary purpose of this newsletter to is broaden public knowledge of the clinical trial and research involvement opportunities and events available, so as to build capacity and interest in the community to get involved in research.

I'd love you to share this newsletter and encourage people to subscribe if you think it has value. If it is missing the mark, please reach out with any concerns, feedback, etc, to CCReW@AccessCR.com.au. Together I know we can make a difference to both the research sector, and the community, to make research faster, more person-centric, and more relevant.