CCReW Clinical Trial/Research News 10 Oct 22

Dear

Over this past weekend, I made some more updates to the CCReW website to outline the support AccessCR is currently offering for CCReW. This update enabled me to finally "launch" the CCReW Conference/Event Support Scholarship Program, with the announcement that the next round of scholarships is now open for applications. This round welcomes applications by 17 October, 6pm AEDT from consumers involved in research interested in attending the Australian Clinical Trials Alliance (ACTA) Annual Scientific Meeting (ASM) in Adelaide, 7-8 November.

When I announced the Scholarship round in the Research Gamechangers FB group, one of the members, Joanne, reminded me that she had attended the 2018 ACTA ASM on a free consumer registration pass. So I thought it might be timely to chat with her about that experience, and what attending the conference led to. Read all about that in the CCReW Blog.

It is amazing to see how much Joanne has got involved in just because of that conference opportunity. It's why I am passionate about facilitating consumer access to conferences for capacity building and why I am very grateful to the sponsors that have helped make this Scholarship program possible. We already have the next conference in mind too, which we'll announce a little later in the year. I hope you'll share this newsletter around and encourage people to apply for the Scholarship if appropriate.

Outside of the Scholarships, there are a few interesting activities and events happening, listed in the opportunities section below. I'll also be heading to the ACTA conference and would love to meet up at 4pm on the 7Nov in Adelaide with any CCReW that might want to say hello. Stay tuned for a location next newsletter or in the FB group.

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 26Sep - 10Oct2022 not previously listed here, as at 10Oct2022.

Tuning Relationships with Music psychotherapy for traumatised parents and adolescents experiencing relational conflict: Exploring changes in dyads' conflict interaction and counsellors' implementation experiences. This randomised controlled treatment trial is a follow-up study to a previous one at this centre in VIC. It is looking to recruit 130 people from two groups - parents and adolescents (10 - 18 years) who have experienced sexual and/or physical violence and are receiving counselling from the Gippsland Centre Against Sexual Assault, and, counsellors employed by the Gippsland Centre Against Sexual Assault.
Rebate for an Adolescent Health Assessment Trial (RAd Health Trial). A cluster randomised controlled trial which aims to investigate whether a Medicare Benefits Schedule (MBS) rebate is effective at increasing the detection and management of risk behaviours and health conditions in young people aged 14-24 and is cost-effective. This randomised controlled prevention trial running in VIC is looking to recruit both GP Clinical with the appropriate patient cohort and electronic medical record software, and 1000 people aged 14-24 years attending those GP clinics for their own health.
Testing safety and efficacy of a live bacterial therapy for the treatment of active Rheumatoid Arthritis despite Methotrexate. This randomised, double-blind, placebo-controlled, Phase 1/2 dose comparison study running in QLD is looking for 45 people aged 18 to 75 years with have active Rheumatoid Arthritis and an inadequate response to conventional DMARD therapies and/or low dose steroid.
Efficacy of mepolizumab in management of Drug Reaction with Eosinophilia and Systemic Symptoms (DRESS) syndrome relapses: a pilot study. This non-randomised, single group treatment study running in Sydney and Melbourne is looking for 8 people aged 18 years and older who are diagnosed with DRESS Syndrome and a specific eosinophil count.
An Australian Trial of Genotype-Guided pharmacotherapy for Moderate-to-Severe Depression (ALIGNED Study). This randomised controlled, blinded treatment trial is looking for 776 people aged between 18-75 diagnosed with moderate to severe Major Depressive Disorder in whom antidepressants are indicated but are yet to be initiated during the current episode. There are research centres in NSW, QLD, SA, WA and VIC.
A Study of JNJ-75276617 in Combination With Acute Myeloid Leukemia (AML) Directed Therapies. This Phase 1 study running in Sydney and Melbourne is looking for 150 people aged 18 years or older with a diagnosis of relapsed/refractory Acute Myeloid Leukemia harboring NPM1 / KMT2A alterations.
A Study of Guselkumab in Participants With Fistulizing, Perianal Crohn's Disease. This Phase 3 randomised, placebo-controlled, blinded global study is looking for 280 people internationally aged 18years and older with a diagnosis of Crohn's disease with a minimum duration of at least 3 month, at least one active draining perianal fistula and is naïve to biologics, or demonstrated inadequate response or intolerance to conventional therapies or approved biologic therapies for Crohn's Disease. There are Australian centres in SA, VIC, NSW, WA, and QLD.
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 trial running in Sydney, Melbourne and Perth (and overseas) is looking for 15 people aged 1-17years inclusive at time of primary diagnosis with Burkitt's or Burkitt-like lymphoma/leukemia, diffuse large B-cell lymphoma (DLBCL), or other aggressive mature (CD20+) B-cell lymphomas. Participants up to 25 years of age with Burkitt's or Burkitt-like lymphoma/leukemia are also eligible.

We provide the above trial listings as 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 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.

This newsletter, we are showcasing Joanne's experiences attending the 2018 ACTA conference and the consumer work she has got involved in since as a result of that conference. 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:

The next Research Gamechangers group members online meetup is on Mon 17Oct at 12.30pm. Details in the FB group.
CCReW Conference/Event Support Scholarship applications now open to consumers with an active interest in trials to attend the Australian Clinical Trials Alliance annual scientific meeting - Deadline 17 Oct 2022, 6pm AEDT. Learn more online about how to apply.
Health Translation SA are running a series of free webinars on consumer engagement Thursdays at lunchtime in October. Visit the website to view and register for the remaining sessions.
The Cooperative Trials Group for Neuro-Oncology are holding a Patient Education and Information Forum as part of their Annual Scientific Meeting in Brisbane, on 16th October. It's free, and tickets are available here.
The Australian Clinical Trials Alliance is holding an online event called 'Exploring Technologies to Improve Recruitment Workshop' on Fri 21st Oct 2022, 2:00 pm - 4:30 pm AEDT. It's free, and consumers are welcome to attend. Register online.
Monash Partners and Sydney Health Partners will be hosting a free online webinar "Consumer and Community Involvement (CCI) in clinical trials: exploring the nitty gritty of consumer advisory panels" on Tuesday 25 October, 11am to 12.30pm AEDT online. I happen to be one of the speakers. If you are interested in attending, please register online.
The next ARCS Australia Consumer Partnerships interest area meeting will be held on Tuesday 25 Oct, 12.30-1.30pm AEDT online. Ann Single and Dr Simon Fifer will be discussing the results of their recent research on how patient communities in Australia want to interact with biopharma. I'm just waiting on ARCS providing the registration details, so keep an eye on the ARCS and AccessCR social channels for details any day now.
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.
The 2-day live and virtual HEAL 2022 Conference is on 23-24 Nov. Its a forum for knowledge transfer, scientific debate, and community-wide conversations about research and policy priority setting on human health, climate and environmental change solutions in Australia. Abstracts due Sun 16 Oct.

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