CCReW News 21Nov23- Australia

Dear

Hopefully, this newsletter has just managed to sneak into your inbox on Tuesday as planned. November is it's typical busy time with conferences and projects trying to either start or end before the Christmas break. I hope you are managing to keep your sanity!

The Australia Clinical Trials Alliance international conference is on next week in Melbourne, and while I can't be there this year, I know there will be lots of our research, sponsor and CCReW network attending. So I do hope you find each other and have a great 3 days of learning. There was the possibility of a CCReW catchup in Melbourne next week to take advantage of those that were travelling to Melbourne to meet others. So if you are a consumer interested in meeting up, drop into our facebook group to check the latest on those dinner plans for next Tuesday night.

We are already turning our minds to conferences next year with an abstract deadline for the ARCS conference (the big annual meet-up of therapeutic sector professionals) quickly approaching on 1 Dec. A few of the CCReW have put their hands up to co-design an abstract for a forum on 'what people need from clinical trials'. If you have experience of trials as a participant or consumer research partner and would like to contribute to co-designing this session, please drop me an email ASAP, as we will be finalising that abstract on Friday.

Finally, I decided to hop on the Black Friday bandwagon, and I am putting forward a special shop offer. If you buy an origami sunflower kit between now and 27Nov, you have the chance for free access to one of two group Zoom workshops to be held on the 10th or 17th Dec, 12.00-1.30pm. BUT, there is a limit of 15 spots per workshop! So if you want to take advantage of this offer, meet up with other like-minded people, be guided to make your sunflowers AND have the value of the credit card fee for your shop purchases deducted, use one of the following discount codes at the checkout, depending on the workshop you want to take part in:

For the 10 Dec Workshop, use code: BFW10Dec
For the 17 Dec Workshop, use code: BFW17Dec

This is a first-come, first-served offer. . If the code doesn't work, then all the spots are taken. And, if you have already purchased a sunflower, any spare spots available after 27Nov will be made available to you, as a thankyou for being an early adopter. Details for the zoom workshop will be forwarded to the successful purchasers.

So to keep it short, that just leaves me to wish you a great fortnight ahead, and I hope that life is kind to you.

This is a list of all studies on the ANZCTR approved by a human research ethics committee, that opened to Australian participants since 6 Nov 23, as at 20Nov23. We've highlight the broad population that studies are looking for, and where, so please click the link for full trial details and eligibility.

Cancer

A First-in-Human, phase 1 study of AMT-253, in patients aged 18 years or older with advanced solid tumors. (NSW, QLD, SA, VIC).
A phase 1/2 study evaluating the safety and efficacy of multiple treatments in participants aged 18 years or older with Multiple Myeloma. (NSW)

Mental Health related

Evaluation of Lived Experience Peer Support Intervention for people aged 18 years or older with a diagnosis of a mental health condition attending participating practices in Primary Care. (QLD, SA, TAS).
A phase II feasibility safety study of Psilocybin-Assisted supportive psychotherapy in the treatment of prolonged grief in bereaved carers (aged 18 years or older) of a patient who died from cancer more than 12 months ago. (ACT, NSW, NT, QLD, SA, TAS, WA, VIC).

Healthy Volunteer

A phase 1 study to assess the safety and tolerability of SKY-0515 and how this drug acts in the body in healthy volunteers aged 18-70 years. (SA).
A phase 1 study evaluating ISM5411 administered orally to healthy volunteers aged 18-55 years. (VIC)

Other

A study to assess the visual performance of myopia management contact lenses in adults with myopia aged between 18 - 40 years. (NSW).

We have no connection/involvement with these studies, so please open the links to get the contact details for the study. If the trial is not running near you, ask the researchers if there are other options or travel support available. We'd love to know if you make enquiries and join one of these studies.

If you are a sponsor or researcher that wants to let people know about your newly opened study, please complete our request form or contact us (it's free to list a trial once).

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

ACTA will be hosting an engaging webinar that delves into the world of teletrials, to be held on Tuesday 21 Nov, 3pm AEDT. Register online.
Brisbane Cancer Conference are having a free session, dedicated to consumer advocates, on Thurs 23 Nov, 4.30-6pm. Register online.
The South Australia Health and Medical Research Institute (SAHMRI) are holding a free Open Day from 10am-4pm, on Sunday, 26 Nov.
The Living Evidence for Australian Pregnancy and Postnatal Care (LEAPP) consortium is seeking NHMRC approval for new Australian Pregnancy and Postnatal Care Guidelines. Consultation for the first guideline module is now open until late Nov. View the module and make a submission online. Find out more about the five-year Australian Pregnancy and Postnatal Care Living Guidelines project on the LEAPP Guidelines’ website.
The National HREC Conference 2023 will be held online 29Nov-1Dec. Register free online.
The Garvan Institute (Sydney) are holding a public seminar 8 Dec 10.30am-12pm: A year in review, reflecting on some of the research highlights and breakthroughs of 2023. Register for online or in-person attendance.
The VCCC and partners are inviting consumers, researchers and health professionals interested in engagement practice to come together for an exciting Consumer Engagement and Leadership Forum Friday 8 Dec 10am–12pm in Melbourne. Register online
There is a free meeting (US based) entitled the State of AI in Precision Oncology on 13 Dec 3-8am AEDT. Register online.
The National Health and Medical Research Council (NHMRC) and the Department of Health and Aged Care (the Department) (responsible for implementation of the Medical Research Future Fund, MRFF) are developing a Statement on Sex, Gender, Variations of Sex Characteristics and Sexual Orientation in Health and Medical Research (the Statement), reflecting a joint commitment to health equity, and acknowledging that every person in Australia has the right to be included in safe, high quality research that informs our health care. Public consultation on the Statement is open until 15Dec.
We all know participation information sheets and consent forms for clinical trials need improving. Provide your feedback on the beta-testing versions of a new potential Australian template, developed through a CT:IQ project, available at www.informedpicf.com.au. Consultation is open until the end of the year.

CT:IQ is currently asking for feedback from researchers about how they communicate wtih their trial participants throughout the research, and feedback from consumers about their experiences of communication in trials. As we are part of this project, we really encourage you to participate so what matters to you as trial participants gets recorded.

Here's some other news and resources you might be interested in:

CT:IQ have released a Whitepaper on meaningful two-way communication with trial participants.
The Patient Voice Initiative have released their Christmas Gift Guide for 2023, supporting patient-led businesses. (And if you are looking to gift something purposeful, then we'd love you to also consider our shop!)
Time toxicity associated with early phase clinical trial participation. ESMO Open, Dec 23.
Influence of Cost-Related Considerations on Clinical Trial Participation: Results from the 2020 Health Information National Trends Survey (HINTS). J Gen Int Med Apr23
PIRIT is a free resource to help researchers working with members of the public to plan meaningful public involvement, track and demonstrate the difference it makes.
Patient and public involvement in research: the need for budgeting PPI staff costs in funding applications Res Involv Eng Mar23
UK NIHR Cost Calculator - A UK tool for estimating the budget you'll need for meaningful public involvement in research
Involving children and young people as active partners in paediatric health research. Paed Child Health Nov23.
There's a new podcast, Congress for Patients, and the first 8 episodes provide content on various cancer related topics for patients and carers from the American Society for Clinical Oncology conference. The episode on clinical trials is certainly worth the 20min listening time.
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. We also have a list of some resources for involving consumers in research.