CCReW Clinical Trial/Research News 25Apr23

Dear

Anzac Day has a double meaning for me. It is a day we collectively remember all those that have fought for (and continue to fight for) the freedoms we enjoy as Australians, which must never take for granted. Additionally, it marks a very personal event that has shaped my passion for clinical trials. So I bring today's newsletter to you remembering all that have passed, with gratitude to our past, current and future service men and women, prayers for peace and a safe world, and hope that research will deliver better health outcomes, better quality of life and more time with those we love.

Over the last 2.5 weeks, I've taken some time out to spend with family, travelling around QLD and NSW. We have such a beautiful country and it was soul reviving to see the changing landscapes and wildlife, from the outer Southern Great Barrier Reef, through to the dust of Lightning Ridge and everything in between. It did remind me of how patchy mobile phone/internet coverage and access to services can be once you leave metro areas, and therefore the challenges people in rural and remote areas of Australia will have in accessing, participating and engaging in research. There is much to do!

A quick reminder that our current CCReW scholarship round is open, accepting applications from consumers interested in attending the ARCS Conference in Sydney in June until 5May23 (extended a few days). Check out more on the website. And if you haven't already, please apply for the ARCS consumer scholarship by Fri 28 Apr (deadline extended due to a lack of applications, so you will be in for a good chance of success). While the ARCS scholarship currently only covers registration, there is a really good chance between the CCReW scholarship, and other grant funding, travel costs can be covered. So don't let travel costs prevent you from applying. Be in it to win the opportunity to network, learn and contribute to shaping the therapeutics industry alongside other industy professionals and consumers.

It's advanced warning, but May 20 is International Clinical Trials Day. Many organisations hold events throughout May to demystify and celebrate clinical trials. I'd love to post all the events happening in the next newsletter, so please submit any you would like listed via our form or by email, to make sure everyone knows about them.

So to wrap up, as always, check out the studies, opportunities, activities and resources below. And until we meet again, here's wishing the world 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 11-25Apr23 not previously listed here, as at 25Apr23.

KARPOS - A Phase 1, Single-Centre, Non-randomised, Open-labelled, Escalating Dose Study of Autologous GD2-Specific Chimeric Antigen Receptor-expressing Peripheral Blood T cells in Patients with Recurrent GD2-positive Glioblastoma Multiforme. This Phase 1, non-randomised, open-label treatment study with CAR-T Cells running in Adelaide is looking for 18 people aged 18 years or older with recurrent glioblastoma (grade IV) with greater than or equal to 10% GD2-positive tumour cells (and other criteria).
Pre-surgical embolisation with a novel embolic agent, the Distal Penetrating Embolic System (DPE), for participants with hypervascular extra-axial brain tumours. This Phase 1, non-randomised, open-label treatment study running in QLD and VIC is looking for 10 people aged 18-80 years with an extra-axial supratentorial brain tumour measuring between 2.5 cm and 6 cm and has pre-operative embolization followed by neurological assessment, and subsequent surgical resection within the next 7 days planned (plus other criteria).

Researcher-initiated listing:

Researchers at NeuRA and UNSW, in partnership with PQSA, are recruiting for a study that examines if Virtual Reality Walking is effective as a treatment to reduce chronic neuropathic pain after Spinal Cord Injury. Participants can receive a total of $200 for completing all trial activities. The treatment is home-based, so people living anywhere in Australia can participate. To find out more click here: https://www.neurorecoveryresearch.com/vrwalk-trial

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 complete our request form or contact us (first listing free, subsequent listings for a fee).

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

The latest CCReW Scholarship round to attend the ARCS Australia Annual Conference currently accepting applications until 9am Fri 5 May. NOTE: if you are considering applying for this scholarship, please also apply for the ARCS Consumer scholarship by Fri 28 Apr 23.
The Curtin Health Innovation Institute (CHIRI) Cancer Domain is inviting 8 community representatives to join their Community Advisory Group and play an integral role in their research.
Applications close 28Apr. Learn more here.
Clinical trials are part of routine care for patients. However, information about clinical trials, especially early-phase clinical trials, can be challenging to find and may not be relevant. This may affect the decision to take part in a trial. The Victorian Comprehensive Cancer Centre (VCCC) Alliance's Accelerating Novel Therapies program is excited to announce a project looking at early-phase clinical trial information available to consumers. This vital work will help us understand consumers' feelings about early-phase clinical trials information. You do not need to have taken part in a clinical trial before.

The project will include a consumer focus group (60 minutes via Zoom) with a survey (5 minutes) beforehand. There will be some websites and resources to look at before the focus group. Consumer remuneration will be offered in accordance with the VCCC Alliance Policy and related procedures.Please fill in this link with your name and email address as soon as possible for the VCCC to contact you with more information.

Help Patient Focussed Medicine Development co-create the roadmap of Patient Engagement in MedTech by sharing your insights and ideas in an upcoming interactive virtual session on Thursday, April 28, 1:30 -3am AEST. Register here.
InspireAbility Award 2023. Nominate an individual with disabilities would remarkable inspiring life stories merit recognition. Nominations are due by 30 April. Learn more here.
Monash Partners free webinar 4May, 1-2pm. Meaningful partnerships with mental health consumers and carers - strengthening research and clinical care. Register here.
Western Australia’s Consumer and Community Involvement Program (CCIProgram) is sponsoring 4 CCIProgram members with a lived experience and who are involved in research to a full registration to attend the Science on the Swan Conference. Submit an expression of Interest by Monday, 1st May.
Attitude of Gratitude: A TransCelerate Public Webinar - 10 May 2023, 9-10am. EDT. This session will provide an overview of TransCelerate’s Gratitude Toolkit on how sponsors can acknowledge and show appreciation to our clinical trial participants and care partners. Register here.
Involve Australia and Australian Genomics- have your say on the draft guidelines for researchers proposing to involve the Community in Genomic Reseach. Involve Australia have developed Guidelines for Community Involvement in Genomic Research and would like to invite you to participate in the survey and provide your feedback on the draft to ensure that the final Guidelines are fit for purpose. Please take the time to have your say. Feedback is due back by either 12 or 26 May (we’ve seen conflicting dates).
The first ever “Made with Patients” Awards are opportunities to celebrate and highlight patient engagement champions and initiatives that go above and beyond in their effort to put the patient at the centre of our health ecosystem. The deadline for nomination is currently set up for 20th of May 2023. Learn more here. (Cheekily, if you think our CCReW initiative is worthy, we'd love a nomination! :) )
Health Technology Assessment Policy and Methods Review – Consultation 1. This is the first consultation of a series related to the review of health technology assessment policy and methods in Australia. For more information, visit the Office of Health Technology Assessment's Consultation Hub. Submissions for consultation 1 close 6 June.
Free #NavigatingHealth Community of Practice Webinar 19 Jun 12-1pm AEST: Tests, Trials & Health Care Records (I'll be presenting on accessing and navigating clinical trials).
Monash Partners free webinar 20 July, 1-2pm. Involving consumers in discovery research - reflections and learnings. Register here.

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 complete our request form or email AccessCR.

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

Use Plain Language to Increase Understanding: The MRCT Center Clinical Research Glossary. DIA Apr23.
An updated CIOMS Glossary of ICH terms and definitions (Version 3, 20 April 2023)
The MRCT Center is pleased to announce the release of a series of case studies that describe the experience of returning individual results and data to research participants. A free webinar discussing experiences will be held May 3, 2-3am AEST if interested.
Patients and Families as Partners in Patient-Oriented Research: How Should They Be Compensated? Journal of Patient-Centered Research and Reviews Apr23.
Canadian Insitutes of Health Research: Ethics Guidance for Developing Partnerships with Patients and Researchers
Patient engagement in preclinical laboratory research: A scoping review. Lancet 2021
Citizen Scientists Are Driving Medical Research. Now They Need A Constitution. Time Magazine, Apr23.
Wtih all the talk of increasing diversity of participants in clinical trials, we came across this tool to help organisations assess their cultural competence from the Centre for Culture, Ethnicity and Health.
A Day In The Life Of A Wannabe Clinical Trial Participant. A piece from a life science professional who tried to reach out for a trial.. Who else has had similar experiences?
Aligned with out #ptinclusiveconf advocacy, it was great to see the extent and value of inclusion of consumers at a recent Australian lung cancer conference discussed via Croakey.
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.

We're passionate about ensuring every Australian is aware of the opportunities available to them to make a difference through their participation in and contributions to research. So please share and recommend this newsletter and if Facebook is your thing, get involved in our Facebook group for real-time discussion. And if you have any feedback that can help us improve the usefulness of this newsletter, please get in touch. Together I hope we can help speed up and improve medical and clinical research.