CCReW Clinical Trial/Research News 25 Oct 22

Dear

It's been a crazy fortnight. We opened, closed and awarded CCReW Scholarships to help four consumers travel to the Australian Clinical Trials Alliance (ACTA) Annual Scientific Meeting (ASM) in Adelaide, 7-8 November. I'll be heading there too, to present with Anne McKenzie on ACTA's Consumer Involvement and Engagement Toolkit for clinical trials, further encouraging researchers to involve consumers in their work.

Since I'll be in Adelaide, I thought it would be fun to catch up with any CCReW in town. If you would like to meet me or other consumers involved in research & development in a casual setting, find us at the Strathmore Hotel Garden Bar, 129 North Terrace, Mon 7Nov, 4-6pm. Just drop me a line to say you'd like to come along, so I know I have a table with enough seats.

There's also been some great panel discussion webinars including consumer involvement in research through Health Translation SA, and jointly Monash Partners and Sydney Health Partners, recruitment technologies used for clinical trials through ACTA and the enduring need for consideration of the human elements of clinical trials, and research from Patient Voice Initiative on what patient communities in Australia want from their interactions with biopharma through ARCS. Keep an eye on their respective socials and emails for links to recordings if they

are made available. It's coming to the silly season for events over the next month, so I hope you all manage to survive the last late minute rush toward Christmas in one piece! I know I am feeling it!

One I'd particularly like to highlight is an upcoming workshop on revising the National Health and Medical Research Council/Consumer's Health Forum Statement on involving consumers in health and medical research (see the events section below). I've been advised the link to register will be up shortly, so I will share that on our socials when I have it. They are hoping for lots of consumers to attend that workshop (and I'll be one of a number of people speaking).

The other event I'd like to mention is the upcoming Health Services Research Association conference being held in Sydney. I know they are working really hard to make it consumer friendly (and for transparency, I am helping them do so). Check out the consumer registration scholarships opportunity in the events section below and apply by 5 Nov.

And to finish off, today is Drop The Jargon Day. I'd argue its something we need to do much better at in research. So that's my challenge to you (and myself) for the next year - let's work to drop the jargon in research.

Until next time, 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 10-25Oct2022 not previously listed here, as at 25Oct2022.

Effectiveness of neutraceutical therapies on symptoms in adults with long-COVID-19: The Alliance Long COVID-19 Treatment Trial. This open label, non-randomised treatment trial is looking for 60 people in ACT, NSW, QLD, SA,and VIC aged 20 years or older that had COVID more than 3 months ago and had persistent symptoms longer than 3 months.
Testing safety and efficacy of a live bacterial therapy for the treatment of active Rheumatoid Arthritis despite Methotrexate Therapy. This blinded, placebo-controlled, randomised Phase 1/2 treatment study running in QLD is looking for 45 people aged 18-75 years with active Rheumatoid Arthritis who have taken methotrexate for at least 12 weeks and have an inadequate response to conventional DMARD therapies and/or low dose steroid.
Oestradiol PET scans in metastatic breast cancer: investigation of utility of assessing disease burden and treatment response. This pilot screening study running in Perth is looking for 10 men or women aged 18 years or older with ER positive metastatic breast cancer and other treatment history criteria.
A Safety, Reactogenicity, and Immunogenicity Study of mRNA-1045 (Influenza and Respiratory Syncytial Virus [RSV]) or mRNA-1230 (Influenza, RSV, and Severe Acute Respiratory Syndrome Coronavirus 2 [SARS-CoV-2]) Vaccine in Adults 50 to 75 Years Old. This international, Phase 1, Randomised, Observer-blind prevention (vaccine) study running in NSW, QLD and VIC is looking for 675 healthy adults globally aged 50-75 years.
A Phase 0/2 Study of AB-218 in Patients With IDH1 Mutated Low Grade Glioma. This first in human, open label treatment trial running in Melbourne is looking for 10 adults aged 18 to 39 years of age with diagnosis of a IDH1 Low Grade Glioma (tumour size 2-5cm) who have not received prior radiation or chemotherapy and are planning for elective, non-urgent surgery to remove the tumour.
A Study of Tirzepatide (LY3298176) on the Reduction on Morbidity and Mortality in Adults With Obesity. This international, phase 3, randomized, double-blind, placebo-controlled treatment study is looking for 15000 people globally aged 40 years or older with a BMI = 27 and established cardiovascular disease or specific risk factors and no diabetes.

This listing is a free service to help people know what studies have recently started that they or someone they know could have an interest in. Please contact researchers directly through the listings as we have no connection/involvement with these studies. If you do contact a researcher, or enter a trial on the list, please let us know. We would love to know whether these listings are helping people find studies.

If you are a researcher that wants to let people know about your recruiting trial here, 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.

Today we are sharing Leanne's experience as a parent searching for trials for he son with osteosarcoma, a rare bone cancer affectingpredominantly young adolescents. Leanne speaks amongst other things about the challenges in finding trials, the need for horizon scanning, and what a good trial coordinator means for trial participants and their families.This story and others can be found on our blog.

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 that may be of interest:

Sydney Health Partners and HCNSW are holding a free webinar on Involving Consumers in health and medical research 28 Oct. Register online
The Health Services Research Association of Australian and New Zealand (HSRAANZ) annual conference is on in Sydney 30Nov-2Dec. There are 5 consumer scholarships on offer covering registration and up to $200 travel expenses. To apply, visit the online form. For any questions, or a Word copy of the application form, please contact Rebecca Jessup via email Rebecca.jessup@nh.org.au or phone 0417425275. Applications are due by Friday 5th Nov, 5pm.
Adelaide CCReW meetup. If you're a health consumer involved in research and/or attending the ACTA conference, come along and meet up with some other like-minded consumers at the Strathmore Hotel Garden Bar, 129 North Terrace, Mon 7Nov, 4-6pm. Just ask for the table for Janelle. (And if you think you might come, please let me know so I book enough seats!).
The National and Health and Medical Research Council (NHMRC) and the Consumers Health Forum of Australia (CHF) are convening a stakeholder consultation workshop to begin the review process of the NHMRC and CHF Statement on Consumer and Community Involvement in Health and Medical Research. The workshop will be held on the 15th November 2023 at 2 pm (AEST) via MS Teams. Registration will be through Eventbrite with details to come.
Health Consumers NSW Showcase ‘Celebrate Connections: Designing the future together’.
is being held in Sydney Fri 18 Nov, 10am-2pm. It will include launch of ConViCTioNs co-designed resources to support participation in clinical trials. Register online.
Monash Partners is holding a free webinar 22 Nov 22, 10am where a panel of clinicians, researchers, health service leaders, researchers and consumer representatives will answer your questions on the successes and challenges of integrating community and consumer involvement into practice. Register online.
Open consultation: WHO ICTRP guidance for reporting summary results in clinical trial registries. There is substantial variation in the elements of summary results collected by trial registries. To promote harmonisation, recommendations for the minimum elements of study results that should be reported in trial registries has been drafted. The purpose of this consultation is to solicit feedback from stakeholders - including researchers, patients, journal editors, funders, industry sponsors, and regulators - on key components of this draft guidance. The deadline for submitting feedback is 11 November 2022.
If you have an interest in research and health literacy, and you want to know more about becoming a reviewer of plain language summaries, please contact Amanda Boughey (Global Patient Partnership Director, Medical Affairs, Envision Pharma Group; Amanda.Boughey@envisionpharma.com). Payment, training, and support will be offered to successful applicants. There's no deadline for applications - they are welcome anytime. You can learn more about the ethical and effective preparation of plain language summaries here https://pemsuite.org/How-to-Guides/WG5.pdf and here https://www.envisionthepatient.com/plstoolkit

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