CCReW Clinical Trial/Research News 14Mar23

Dear

Late last week, our latest 4 CCReW Scholarship recipients went off to the COSA Cancer Survivorship conference. By all accounts they were really energised by the conference, did some great networking and I look forward to hopefully being able to share their experiences with you shortly.

Also last week, I had great conversations with a couple of experienced consumer representatives that are starting to down tools after many years of contributing to research. I will be sharing some of their insights on the CCReW blog in due course. What struck me about both of these chats was the enormous good will, time and effort necessary, and how tiring that can become.

We desperately need to encourage more patients and their families to consider contributing to research. This will both help spread the burden and reduce burnout, but also ensure many diverse voices and experiences are taken into account. How do we make it easier? How do we appropriately support people? How do we avoid burnout? How do we get diverse voices? I don't have all the answers, but I hope CCReW can be part of helping find the solutions.

To that end, over the next 2-3 weeks, I'll be reaching out to talk to as many former trial participants, carers of trial participants and consumer partners in research as possible, either individually or in small groups, to help shape/validate a new free product for consumers that AccessCR is looking to develop. There will be some compensation for the time involved. If you are interested in being part of the conversations, please register your interest and availability online as soon as possible. I would also value if you could share this opportunity with others in your networks that may have participated in a clinical trial or are an active consumer partner/contributor in research.

And until we meet again, check out the trials and consumer involvement opportunities below, and I wish for the world to 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 28Feb-14Mar23 not previously listed here, as at 14Mar23.

A Phase 1, Randomized, Double-blind, Placebo-controlled, First in Human Study of the Safety, Tolerability, Pharmacokinetics and Pharmacodynamics of single and multiple doses of MVD1 in healthy adult volunteers. This Phase 1, randomised, double-blind, placebo-controlled, first in Human study running in Adelaide is looking for 48 healthy volunteers 18-60 years of age (Part A) or 25-50 years of age (Part B).
A pilot study to investigate warm and humidified carbon dioxide delivery to the surgical site in patients undergoing craniotomy. This blinded, randomised controlled, prevention study running in Melbourne is looking for 30 patients aged between 18-80 years undergoing elective craniotomy for an aneurysm performed by a participating surgeon.
Food is Medicine: an Australian trial of a medically tailored meals intervention on type 2 diabetes and heart disease outcomes in adults. This blinded, randomised controlled treatment study running at four sites in Sydney is looking for 212 people aged 18years or older diagnosed with type 2 diabetes for at least 12 months and persistently high blood glucose levels (HbA1C) that have difficulty getting and eating nutritious foods.
'One injection vs. three': Clinical evaluation of a single, high dose subcutaneous infusion of benzathine penicillin G for treatment of syphilis (SCIP Syphilis). This non-randomised, phase 2 trial running in Fremantle, WA is looking for 40 males and non-pregnant females aged older than 18 years diagnosed with syphilis and requiring treatment with benzathine penicillin G in the form of Bicillin® L-A.
Pharmacy-Based Screening and Quality Use of Medicines in Kidney Disease. This open label, randomised controlled, diagnostic trial running in NSW, QLD and VIC is looking for 3660 participants. To be eligible for screening, participants must be aged between 35-74 years, have at least one risk factor for chronic kidney disease and not have kidney failure or no be receiving kidney replacement therapy.
A Study to Investigate the Safety, Tolerability, Immunogenicity, and Pharmacodynamics of VXX-401 Compared With Placebo in Adult Participants. This double-blinded, randomised, placebo-controlled, phase 1 first-in-human study running in NSW, QLD and VIC is looking for 48 healthy people aged 18-75 years with specific LDL-cholesterol and BMI values.
Long -term Efficacy and Safety of Tozorakimab in Participants With Chronic Obstructive Pulmonary Disease With a History of Exacerbations (PROSPERO). This global, blinded, randomised controlled, phase 3 treatment extension study running in NSW, VIC and WA is looking for 2544 people internationally with COPD who were enrolled in the predecessor study.
COVID-19 Booster Study in Healthy Adults in Australia. This blinded, randomised controlled, phase 3 prevention study running in Melbourne is looking for 600 healthy people aged 18years or older that have received 3 doses of COVID-19 vaccines at least 6 months earlier, and have not had COVID within the last 3 months.

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).

The inclusion of women in clinical trials remains lower than it should be, meaning we often don't have good data on how different treatments might work in women. Thankfully, there are increasing efforts to address this disparity, as well as in increase the inclusion of other underrepresented groups in clinical trials.

Given it was International Women's Day last week, we thought we'd share the story of Heather, a woman participating in an MS clinical trial, published on AustralianClinicalTrials.gov.au.

If you are a trial participant, consumer involved in research or a carer/family supporter of either, or are a researcher involving consumers in their work, and you'd like to share your story on the CCReW blog, 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:

Learn about Medical Research Future Fund (MRFF) grant assessment processes at the next MRFF webinar - 15Mar23, 2pm (AEDT). (Watch previious MRFF webinars here)
Patient Voice Initiative Grants to attend HTAi 2023 Adelaide. Applications close 17Mar23.
The next ARCS Consumer Partnerships Interest Area meeting will be discussing the CT:IQ project that aims to improve clinical trial participant information and consent forms. Registration is open to anyone, however is only free for ARCS members and health consumers. Health consumer should email arcs@arcs.com.au for the discount code to use when registering for the session. Webinar is on 28 Mar23, 12.30-1.30pm AEDT.
Australia’s National Science and Research Priorities and National Science Statement will provide direction for our science system. The Govt are seeking your views on refreshing the priorities to reflect Australia’s ambitions and challenges. Submissions close 31Mar23.
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
White Coats Foundation are again collecting clinical trial participant stories/art in advance of international clinical trials day.
The National Health and Medical Research Council's (NHMRC) is seeking consumer and community representative peer reviewers for the Targeted Calls for Research (TCR) scheme. New measures have been introduced to allow consumers and community representatives to score research applications received through NHMRC’s TCR scheme.

If you'd like to proactively advertise a consumer research involvement opportunity or event, or would like to engage our help or advice on an activity, then please contact AccessCR.

Here's a few resources you might be interested in:

More and better clinical trials in health care: focusing on people, not just systems and processes, Feb23. Med J Aus, Feb23. “Clinical trials improve care and save lives but need more clinician and consumer engagement”
Communities driving health care research. NHMRC Mar23. Learn about the team at STRengthening systems for InDigenous healthcare Equity (STRIDE) and how they are driving change to position Aboriginal and Torres Strait Islander communities at the core of health care research.
Cancer Research UK: “Nothing about us without us”: Why we’re working in partnership with other leading health organisations on the Shared Commitment to Public Involvement
Calculating Diversity in clinical trials. Appl Clin Trials Mar23.
The Impact of Trial Design on Interest by Race and Ethnicity. Appl Clin Trials Mar23.
Patient engagement in a national research network: barriers, facilitators, and impacts. Res Involv Engage Mar23.
Adopting recommendations for implementing patient involvement in cancer research: a funder’s approach. Res Involv Engage Mar23.
Rare Disease Non-Profit Shows Drug Development Savvy. FAST sold a drug candidate to seed other treatment strategies for Angelman syndrome. Mar23.
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.