AccessCR CCReW Trials & Research Involvement Opportunities/Events 21Jun22

Dear

In Australia, according to MTPConnect an estimated 1000+ trials start each year, which suggests on average around 20+ should start each week. Yet, in pulling together this newsletter, I've been finding far less than that on the ANZCTR - more like 4-5 per week starting.

Trying to understand this problem, I recently posted on LinkedIn to see what insights I could get as to why this was the case.

The feedback I got publicly and privately from this post suggested that resourcing at the ANZCTR might have something to do with it, with delays of weeks in some cases before the ANZCTR is updated. This just further demonstrates the barriers people have in finding out what trials are open, and why I will continue to work to change that.

So, to make sure the newsletter can provide people as many of the trials starting as soon as possible, I'm offering for researchers and industry to email me the same details I share on the listing below as soon as their trials open, just in case the ANZCTR is running behind. You can read more about this free offer on my Facebook or LinkedIn posts.

If you think the offer is worthwhile, I would love your help in sharing those social media posts or this newsletter, so that those running trials know about the offer and take advantage of the free publicity for their trials.

On another matter, I am currently evaluating how best to allocate consumer travel support for conferences using the left over funds raised for this purpose for the ARCS conference, and which 3-4 conferences we will offer travel support to in the second half of the year. I've open up discussion on what types of conferences consumers would like to attend to upskill in the Resarch Gamechangers Facebook Group. If you have an opinion, join up and jump into the group and have your say.

And while you are there, you might find another hot discusssion around consumer partners being compensated (or not) as associate investigators of interest.

Hoping the next fortnight is 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 6-20 June 2022, as at 20 June.

Degree of habitual behaviour modulation of non-invasive brain stimulation effects on cognitive flexibility in healthy participants. This placebo controlled device study at a centre WA is looking for 30 healthy people aged 18-50 years.
A Single-Centre Pilot Trial Investigating the absorption of estradiol following a single application to the skin of estradiol coated microparticles in healthy post-menopausal women. This pilot interventional trial at a centre in Adelaide SA is looking for 3 healthy post-menopausal women aged 18 years or older.
Comparing effects of knee osteoarthritis educational information, with and without pathoanatomical content, on consumer osteoarthritis management beliefs: An online randomised controlled trial. This randomised controlled trial is looking for 556 people aged 45 years or over from anywhere in Australia that have, or have not, experienced any activity-related knee joint pain in the past 3 months, and are able to understand and read English, to read an approx. 1-page digital information pamphlet and complete an online survey.
Music Attuned Technology for Care via eHealth – MATCH: Proof-of-Concept (Study 2). This single-arm, proof of concept treatment study is seeking to enrol 32 people living at home with dementia and their co-habitating family caregivers, from anywhere in Australia.
A Study of mRNA-1010 Seasonal Influenza Vaccine in Adults. This phase 3, randomised controlled prevention trial is seeking 6000 healthy people aged 18 years or older in Australia and South America. There are research centres in NSW, SA, ACT, VIC, and QLD.
ATX-101 for Post-surgical Pain Following Total Knee Arthroplasty. This Phase 2B, Randomized, Double Blind, Placebo and Active Comparator drug trial is looking for 345 people aged 18-18years with knee pain due to osteoarthritis or post traumatic arthritis schedule to undergo total knee arthroplasty (and more) at a centre in Adelaide SA.
Study of the Adverse Events and Change in Disease State of Pediatric Participants (and Young Adults Between the Ages of 18-25) With Relapsed/Refractory Aggressive Mature B-cell Neoplasms Receiving Subcutaneous (SC) Injections of Epcoritamab. This single arm, open-Label, Phase 1b global drug trial is looking for 15 people at centres in NSW, VIC and WA aged 1 to less than 18 years of age with relapsed/refractory aggressive mature B-cell lymphomas. Participants up to 25 years of age with Burkitt's or Burkitt-like lymphoma/leukemia are also eligible.
BIVV020 in Prevention and Treatment of Antibody-mediated Rejection (AMR). This randomised, Phase 2, open-label global study is looking for 54 people in one of 2 groups – people with chronic kidney disease who will receive a kidney transplant, and kidney transplant recipients diagnosed with active AMR. Participants need to be 18-75years. The research centre is in Westmead, NSW.

If a trial has just started, but is not listed about, there may be a couple of explanations (eg, ANZ CTR not up to date for some reason or the, trial not registered on ANZ CTR or clinicaltrials.gov).

To learn more about any of these studies, please contact the research teams directly (details will be in the links). If you have problems contacting the researchers, please let us know. AccessCR has no relationship with any of these projects and conducts this search of the public register to help people know as soon as possible about the research looking for participants.

If you'd like to proactively advertise a research study, then get in touch. Your advertising will help us continue this free CCReW support service.

Have you ever been asked about your experience participating in research?

Our concept research participation experience survey is online for anyone that would like to keep a record of their experiences over time. It can be completed at any time, from trying to access a research study, to participating and completing the study, and as often as you like. You will be emailed a copy of your responses to do with as you wish.

Telling us about your experience will also help us identify opportunities for improvement, or centres giving great experiences to participants that others might be able to learn from.

The following are some activities that have come across our desk that people may be interested in contributing to:

Dr Hazel Jenkins, Macquarie University NSW, is looking for a health consumer partner to be an associate investigator on a Low Back Pain project. This is an opportunity to join the research team on a grant application for research funding through the MRFF Clinician researchers scheme. The project will investigate whether a patient education intervention can reduce unnecessary imaging and improve management of low back pain in general medical practice. For more information, email: hazel.jenkins@mq.edu.au
VCCC Alliance: Clinical trial matching survey. Some patients will search for trials themselves, with 'matching' websites offering a service to find or match clinical trials to the patient. We are collecting consumer feedback on these websites to inform an important awareness project as part of our Clinical Trial Innovations program. Take the survey here.
Via Dr Dawn Richards, Canada: Our team is looking for your insights about COVID19 recommendations and how they're written & presented. This is open to anyone >21 years of age (anywhere in the world). surveymonkey.com/r/HSMPN86
Join in shaping the future of patientengagement and patient experience data. Anyone can participate in a public consultation being conducted by PFMD.org for the first Global Navigator for patient experience data. Click here for more information.

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

The following are upcoming research/trial-related events we and others may be running where consumers are welcomed.

The Australian Commission on Safety and Quality in Healthcare a running 3 public consultation workshops during June for phase 2 of their work toward a National One Stop Shop for Clinical Trials. Click here for more information on the One Stop Shop project and to register for the public consultations.
Join White Coats Foundation's forthcoming webinar - "What is Consumer Led Research". Tune in on Wednesday, July 13th @1pm. More information is available here.

Let us know if you'd like to proactively advertise an upcoming research-related event where consumers are welcomed.