AccessCR CCReW News & Opportunities 7Jun22

Dear

It's a couple of weeks now since the ARCS conference (below) where it was great to start talking to consumers and research industry professionals about the CCReW concept and the plans for a trials helpline, clinical trial participant welcome packs, participant experience survey, trial navigators and more.

I also loved meeting the two recipients of the travel support we had been able to raise with the help of Rare Cancers Australia, Medicines Australia, Lucid Health Consulting and TrialDocs. It was heartening to see both really embracing the opportunity - making new connections, talking consumer engagement, and contributing their voice to the discussions. We look forward to giving more CCReW travel support to attend other conferences later this year, so stay tuned for those opportunities.

The collaboration and financial assistance of those providing travel funding is an example of what's needed to realise the ideas for supporting CCReW. I hope more organisations engaged in research will see the value iof investing in support of the CCReW and ultimately improving general trial success. Reach out if you want to help make that happen, as a corporate social responsibility commitment, as a donor or client, or as a collaborator sharing resources. Google 'collective enoughness' - I know we have all we need to succeed if we work together.

Finally, I want to celebrate the small and large CCReW activities and achievements. So please send in your news, pictures or reflections on trial participation or as a consumer partner in research, so I can share it with the rest of the CCReW community. Your stories might just inspire someone else in/into research.

Janelle.

AccessCR and the CCReW initiative

Have you ever been asked about your experience participating in research?

Our protoype research participation experience survey is online for anyone that would like to keep a record of their experiences over time. It can be completed at any time, from trying to access a research study, to participating and completing the study, and as often as you like. You will be emailed a copy of your responses to do with as you wish.

Tell us about your experience, so we can identify opportunities for improvement, or centres giving great experiences to partcipants.

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 23 May - 6 June 2022.

ConsCIOUS-3: Will noradrenergic suppression reduce connected consciousness after intubation? This randomised, placebo controlled trial recruiting at Royal Prince Alfred Hospital in Sydney NSW will be recruiting from their surgical lists 52 people aged 18-40years who will require intubation for general anaesthesia.
The effects of the bitter agonist, quinine, on gastric emptying in healthy normal-weight volunteers. This double-blind, randomised, interventional trial is looking for 14 normal weight healthy people aged 40-80years at a centre in Adelaide, SA.
A Phase 1, Open-label, Multi-Period, Single Sequence Study to Evaluate the Relative Bioavailability, Performance, and Safety of Two Solid Oral Doses (Paltusotine Tablets) in Healthy Volunteers. This non-randomised study is looking for 14 healthy people aged 18-65 years at a centre in Adelaide, SA.
A Pilot Study of Cognitive Behavioural Therapy for Migraine in Multiple Sclerosis. This randomised controlled, unblinded treatment trial is looking for people aged 18-60yrs with a diagnosis of migraine and relapsing-remitting multple sclerosis at a centre in Melbourne, VIC.
Cannabidiol: Treatment for brain changes and depression in early-stage dementia. This phase 2 randomised controlled treatment trial running at a centre in Wollongong, NSW is looking for 60 community-dwelling people aged 55-75 with early dementia diagnosed in the past 24 months and a support person to help with daily medication monitoring.
Cancer Molecular Screening and Therapeutics (MoST) Program Addendum 18 substudy 40:
A single-arm, open-label, signal-seeking, phase II trial of durvalumab and chemotherapy in patients with extra-pulmonary small cell carcinoma. This phase 2 study is looking for people aged 18years or older with extensive-stage extra-pulmonary small cell carcinoma, that has not been treated and for which surgery or curative radiotherapy is suitable. There are centres in NSW and QLD.
A pilot open label study of combination treatment lutate and temozolomide in the treatment of succinate dehydrogenase-associated pheochromocytoma and paraganglioma in adults. This pilot non-randomised clinical trial is looking for 4 people aged 18 years or older with pheochromocytoma or paraganglioma associated with a gene change called succinate dehydrogenase at a centre in Sydney, NSW, to help find out whether combination therapy with lutate and temozolomide can reduce disease progression and improve survival.
GB5121 in Adult Patients With Relapsed/Refractory CNS Lymphoma. This Phase 1/2 open-label dose escalation study is looking for 158 people in WA and New Zealand with confirmed primary central nervous system lymphoma (PCNSL), primary vitreoretinal lymphoma (PVRL), or CNS-only High-Grade B-cell lymphoma or CNS involvement with systemic High-Grade B-cell lymphoma (DLBCL/SCNSL), relapsed/refractory disease and have received at least one prior CNS-directed therapy.

If there are trials you know have just opened, but are not on this list, then it may be because the ANZCTR listing was not up to date at the time of the search, or the trial was not listed as approved, recruiting and with a start date during the search window. If you are interested in more information, please click the links and contact the researchers listed directly. If you have problems contacting the researchers, please let us know. AccessCR has no relationship with any of these projects and conducts this search of the public register to help people know about the research studies looking for participants.

If you'd like to proactively advertise a research study, then get in touch. Your advertising will help us continue this free CCReW support service.

The following are research activities looking for consumers that we have been made aware of or asked to distribute.

A Sydney-based researcher is looking for people with gout who might be interested in being part of a reference group (meeting virtually) for some research she is currently doing about gout and taking medication (medication adherence). The main role is to advise on various aspects of the research. People don't need any medical or research experience. Their lived experience of gout is what is required. If interested, please contact Dr Ayano Kelly ayano.kelly@health.nsw.gov.au
The Health Consumer NSW June newsletter has a number of consumer involvement opportunities advertised.

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

The following are upcoming research/trial-related events we and others may be running where consumers are welcomed.

The Australian Commission on Safety and Quality in Healthcare a running 3 public consultation workshops during June for phase 2 of their work toward a National One Stop Shop for Clinical Trials. Click here for more information on the One Stop Shop project and to register for the public consultations.
Our next Research Gamechangers online group meetup is on 20th June at 8.30pm AEST. Join the group for more information.

Let us know if you'd like to proactively advertise an upcoming research-related event where consumers are welcomed.