CCReW Clinical Trial/Research News 19Jul22

Dear

It's been a somewhat quieter couple of weeks in my household workwise with school holidays and the inevitable colds that surface at this time of year. So there is not too much to catch you up on.

There's been some chatter in the Facebook group around (lack of) consumer registrations fees and/or travel support for some upcoming conferences that we'll be keeping an eye on, as well as a bit of discussion (given lots of researchers seem to be grant writing at the moment) around consumers as coordinating or associate investigators. White Coats Foundation held an interesting webinar last week about consumer led research and what it is, with no clear consensus on a definition agreed. This topic also happened to come up amongst the small group at last night's Facebook group monthly

online meetup. The practicalities of trying to describe consumer led research in a word-constrained grant application in a way that might meet some 'unknown' definition was raised.
It seems to me something is definitely a-miss when a consumer who is a coordinating investigator on a grant and agrees the project is consumer led, doesn't feel their team are able to adequately describe how consumer demands have driven what is being researched and so won't go for a 'consumer-led' grant.
This suggests the research ecosystem still has some way to go yet to effectively and flexibly embed how consumers can, should and want to be involved in directing, leading, driving research. Maybe no definition is the answer, but that also leads to its own confusion.

So with that food for thought lingering, best I just move on to wish you happiness and kindness over the next couple of weeks.

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 4-19 July 2022, as at 18Jul22.

Effectiveness of a telehealth-delivered clinician-supported exercise and weight loss program (Better Hip) for hip osteoarthritis: a randomised controlled trial This rehabilitation trial is looking for 212 people 45yrs and older with osteoarthritis and activity-related hip joint pain from anywhere is Australia.
BeCALM: a pilot randomised controlled trial of an intervention to reduce procedural anxiety during radiotherapy for cancer This treatment trial is recruiting 57 people aged at least 18 years scheduled to undergo radiotherapy at the Calvary Mater Newcastle, Department of Radiation Oncology and who may be feeling anxious about it.
A Randomised, Double-Blind, Placebo Controlled, Phase 2 Study to Evaluate the Efficacy and Safety of Sublingual TransT3-60 in the Treatment of Non-Alcoholic SteatoHepatitis (NASH) This phase 2 treatment trial is looking for 80 people aged 18 years and older likely to have NASH but not cirrhosis at centres in NSW, QLD, SA, WA, and VIC.
The effectiveness and cost-effectiveness of a web-based intervention to support colorectal cancer patients prepare for and recover from surgery: A randomised controlled trial of the RecoverEsupport intervention. This prevention study is looking for 334 patients aged 18-80 years with a planned bowel resection for colorectal cancer at a centre in Newcastle, NSW.
Single arm, open label, signal seeking, phase II trial of pamiparib in patients with relapsed/ refractory myeloid haematological malignancy with aberrant germline or somatic DNA repair pathway function. This phase 2 substudy of the Molecular Screening and Therapeutic (MoST) program is looking for 16 people aged 18 years and older, with confirmed high grade haematological malignancy of any myeloid subtype, including but not limited to AML, MDS and MPN or an earlier diagnosis of a poor prognosis cancer at centres based in NSW, QLD, SA, TAS, and WA.
A phase 2 study of neoadjuvant Pembrolizumab in cutaneous squamous cell carcinoma (cSCC). This phase 2 treatment trial running in NSW and QLD is looking for 27 people aged 18 years or older with invasive cSCC that is locally advanced (plus more).
Novel Delivery of Chemotherapy for Treatment of Patients with Mesothelioma: A Feasibility Study This Phase 1/2 treatment trial running in Brisbane, QLD, is looking for 6 people aged 18 years and older with unresectable malignant pleural mesothelioma that have not to responded to first line standard of care chemotherapy.
First-In-Human Study to Investigate the Safety, Tolerability, Pharmacokinetics and Pharmacodynamics of ALT-100 This Phase 1 treatment trial running in Adelaide, SA, is looking for 32 healthy volunteers aged between 18-55 years of age.
A Phase I/II Study of DYP688 in Patients With Metastatic Uveal Melanoma and Other GNAQ/11 Mutant Melanomas This treatment trial is looking for people aged 18 or older with metastatic uveal melanoma or other GNAQ/11 mutant melanomas for the Phase 1 dose escalation part, and for phase 2 a number of different subgroups of people aged 12 or older with metastatic uveal melanoma/non-uveal melanoma that harbor GNAQ or 11 mutations.
Study of ARO-APOC3 in Adults With Dyslipidemia. This follow-up treatment study running in WA is wanting to enrol 536 people that completed the 48-week study treatment period in the parent study.
Study Investigating BGB-24714 as Monotherapy and in Combination With Chemotherapy in Participants With Advanced or Metastatic Solid Tumors This Phase 1 treatment trial running at centres in VIC and QLD is looking for 244 people globally with confirmed, unresectable, locally advanced or metastatic solid tumor.
Coronary Computed Tomography Study to Assess the Effect of Inclisiran in Addition to Maximally Tolerated Statin Therapy on Atherosclerotic Plaque Progression in Participants With a Diagnosis of Non-obstructive Coronary Artery Disease Without Previous Cardiovascular Events This Phase 3 treatment trial running in SA is looking for 600 people aged 18-80 years internationally with presence of coronary artery plaque not obstructing the coronary artery and specific LDL levels.
A Prospective, Multi-Centre Trial of TKI Redifferentiation Therapy in Patients With RAIR Thyroid Cancer (I-FIRST Study) This Phase 2 treatment trial running in NSW, QLD, VIC and WA l is looking for 80 people aged older than 18 years with differentiated (including poorly differentiated) thyroid cancer that is either locally advanced or metastatic.
An Open-Label Study of the Safety, Tolerability, and Pharmacokinetics of Oral NNZ-2591 in Angelman Syndrome This Phase 2 treatment trial running in NSW, QLD and VIC is looking for 20 people aged 3-17 years with Angelman Syndrome with specific characteristics.

To learn more about any of these studies, please contact the research teams directly via the links. 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 as soon as possible about the research looking for participants.

If you'd like to proactively advertise a research study, then get in touch. The first listing of a newly recruiting study is free, and subsequent listings are available at a small cost. Advertising your trial will help the CCReW know about it, and will help us sustain this free CCReW support service.

Back in May, AccessCR led a collaborative in donating funds to support travel costs for consumers attending the ARCS 2022 Conference in Sydney.

Deb was one of the people we were able to help support financially to cover her travel costs from Cairns to attend the conference. We asked Deb if she could share a little about what it meant for her to be able to attend the conference, and she gratefully took on the challenge. Read more about Deb's experiences as a consumer attendee to the ARCS Conference, and what she got out of it on our website blog.

As a reminder....

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.

Our concept research participation experience survey is online for anyone that would like to record/note their trial-related experiences over time, as often as you'd like to, from looking for trials, to finishing up a trial. Once completed, you will be emailed your responses to do with as you like. You may choose to send them on to the research centre you are visiting, or not.

Alternatively, we are happy to receive stories by email, talk to you on the phone or a video call, or any other way you'd like to share your story with us.

As a reminder....

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.

Our concept research participation experience survey is online for anyone that would like to record/note their trial-related experiences over time, from looking for trials, to finishing up a trial. Your responses are emailed to you for you to do with as you like, whether that is for your own memory, sharing with family or the trial site, perhaps even blogging or writing a book. And if you think we can improve this survey, please let us know.

Alternatively, we are happy to receive stories by email, talk to you on the phone or a video call, or any other way you'd like to share your story with us.

The following are some activities that have come across our desk that people may be interested in:

Australia's National Health and Medical Research Council (NHMRC) are currently consulting on a revised Chapter 2.1 of the National Statement on Ethical Conduct of Human Research. The consultation closes 1 Aug.
The Cancer Council NSW has put out a call for consumers to submit an Expression of Interest (EOI) by Monday 29 August 2022 if interested in attending their next, free, 'Consumers in Research' training online workshop on 21 Sep 2022, 10-12.30pm. Click for more information on the training, to submit an EOI, or read more about working with researchers. Alternatively, please email Cancer Council NSW for more information at: research@nswcc.org.au.

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