AccessCR CCReW News & Opportunities #1 9May22

Dear

Welcome to the first newsletter for AccessCR's new Initiative - CCReW. CCReW is short for the 'Community and Consumer Research Workforce'. It's a term I coined for the people seeking and taking part in clinical trials (or caring for those that are), and the health consumers partnering with researchers in medical research and clinical trials.

Through use of this term, I am hoping to empower the CCReW to value their contribution to research, share their voice, and give airtime to their issues and challenges, as a key stakeholder in the research ecosystem. I invite you to keep an eye on the CCReW website and this newsletter for updates. I welcome your ideas, collaboration and input in building momentum for the support of CCReW. As someone that has previously been in contact with AccessCR / Research4Me, I hope this is an initiative you will embrace and get involved with.

It's a week since I launched the CCReW concept, and its great to finally get the first two new initiatives up and running - 1. This fortnightly newsletter for the community and consumers sharing the studies opening, involvement opportunities and events/training to network and upskill, and 2. A research participant experience feedback form (in beta testing).

The Research Gamechangers Facebook Group. will remain part of the CCReW Support pillar providing a place for connection between consumers and the research sector, sharing information, resources and opportunies around access to, the experience of and consumer involvement in research. And to help build those connections, we now hold a an online group meetup, the third Monday of each month at 8.30pm AEST, which all group members are welcome to attend.

Please reach out at anytime if you have suggestions for this update or CCReW, and share this update widely with anyone you think might be interested. Anyone can subscribe to receive it here. I have lots more to share for CCReW in coming weeks and if you are at the ARCS Conference on the 23-25 May in Sydney, do drop by the AccessCR stand for a chat (and badge of honour for CCReW members).

Finally, a big thanks to the CCReW helping advance healthcare, and I hope this new initiative provides you with the support, opportunity and advocacy you so richly deserve. It's time.

Janelle.

Managing Director,

AccessCR

This is a list of all studies on the ANZCTR at 9May22 approved by a human research ethics committee, recruiting in Australia, with a trial start date between 25April - 8 May 22.

Safety and efficacy of psilocybin-assisted psychotherapy for Generalised Anxiety Disorder [Psi-GAD-1]: a randomised triple-blind active-placebo-controlled trial. This Interventional study is looking for 72 people aged 18-75 with severe generalised anxiety disorder at a centre in VIC.
A mental health-informed, online health promotion and balance exercise program for adults aged 60+ years: the MovingTogether trial. This study is an online health promotion program for socially isolated, older adults that targets modifiable risk factors including physical inactivity and balance to improve mental and physical health outcomes. It's a randomised, controlled, prevention trial looking for 80 people with centres in ACT, NSW, NT, QLD, SA, TAS, WA, VIC.
Safety and effectiveness of frameless linac-based stereotactic radiosurgery on tremor in patients with essential tremor or Parkinson’s disease (TREMOR study). This study is trying to find out if using stereotactic radiosurgery to treat tremor is safe and effective in patients who have tremor dominant Parkinson’s or essential tremor and are unable to undergo conventional therapy. It's a non-randomised, treatment trial looking for 30 people at a centre in VIC.
A Study to Evaluate the Safety and Efficacy of PTC518 in Participants With Huntington's Disease (HD). This Phase 2a, placebo-controlled dose ranging study is looking for 162 people globally aged 25+ years with Huntington's Disease. Theer are Australian centre's in VIC and NSW.
To Access the Safety and Effects of Intravenous Administration of AMX 818 Alone and in Combination With Pembrolizumab in Adult Participants With Locally Advanced or Metastatic HER2-Expressing Cancers. This Phase 1 First in Human study is looking for 560 people globally aged 18+ with Locally Advanced or Metastatic HER2-Expressing Cancers. There is an Australian centre in Melbourne, VIC.
A Study of Nivolumab-relatlimab Fixed-dose Combination Versus Regorafenib or TAS-102 in Participants With Later-lines of Metastatic Colorectal Cancer. This study is looking for 700 people globally with Metastatic or recurrent unresectable Colorectal Cancer. There are multiple Australian centres in NSW, QLD, SA, VIC and WA.
A Study to Evaluate the Safety and Pharmacokinetics of XMAB24306 in Combination With Daratumumab in Participants With Relapsed/Refractory Multiple Myeloma. This Phase 1b, dose escalation trial is looking for 60 people aged 18+ with Relapsed/Refractory Multiple Myeloma at a centre in Melbourne, VIC.
Study of SUPLEXA Therapeutic Cells in Patients With Metastatic Solid Tumours and Haematologic Malignancies. This Phase 1, First in Human study is looking for 40 people aged 18-90 years with locally advanced or metastatic solid tumours or haematologic malignancies at a centre in Adelaide, SA.
A Study to Evaluate EDP 938 Regimens in Children With RSV. This placebo-control trial is looking for 90 children globally up to 36month of age with Respiratory Syncytial Virus (RSV), There's a centre in the Gold Coast QLD.

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 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.

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.

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

AccessCR are currently beta testing a research participation experience survey. This survey is free for anyone to use and complete any time they would like to record their (or those they are caring for's) experience participating in a research study.

Depending how much detail you want to provide, the survey will take 5-30mins. And if you don't want to complete it online, you can always call or email us.

Respondents are emailed a copy of their responses, and can use this data for their own purposes, for example, to track their experience in one of multiple visits/studies over time and/or proactively provide this feedback to the researchers running the studies. Alternatively, you can ask AccessCR to share it with the researchers on your behalf.

AccessCR will use the data shared in accordance with the instructions of the respondent, to report on participant experiences, identify examples of good practice and areas for improvement, and inform the CCReW services and advocacy.

Feel free to share this survey freely with anyone that wants to use it, as often as they would like to record their experiences.

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

St Vincents Hospital Melbourne are looking for a volunteer lay/community member to join their Human Research Ethics Committee (HREC). See more here.
Cancer Australia has an open call for expressions of interest (EOI) from consumers that might like to be part of Grant Review Committees for Cancer Australia’s Priority-driven Collaborative Cancer Research Scheme. EOIs close 25 May. See more here.

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

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

The PaCER Network at the University of Sydney are running a free webinar Tues 10 May at 2pm. “Wearing multiple hats: The research journey of an exercise physiologist and person with lived experience of Systemic lupus erythematosus”. To attend virtually, please use the link: https://uni-sydney.zoom.us/j/227785512
AccessCR are running a free Zoom webinar on the 13th May at 1pm AEST called Diving into Clinical Trials - Their Roles Regulation and Conduct. For more information and to register, click here.
Our next Research Gamechangers online group meetup is on 16th May at 8.30pm AEST. Join the group for more information.
White Coats Foundation are running an event calling for images to describe clinical trials, and a webinar 20th May to celebrate some of those stories. Learn more here.
The Australian Clinical Trials Alliance (ACTA) are holding a National Tribute and Awards Ceremony in Sydney on the 20th May , 5-7pm. For more information and to register, click here.
ARCS Australia are inviting people to submit photos of yourself and/or your colleagues holding selfie cards or social media cards to tell us why International clinical trials day is important to you. These will be displayed on ARCS social media on 20 May and at their conference the following week. Learn more here.
Monash Partners and Sydney Health Partners are holding a webinar on 24 May on how consumers can be involved in early phase clinical trials. More info here.
ConViCTioN, a NSW Consumer Advisory group for clinical trials, will be holding a free webinar 27th May, 12.30pm called Consumer Voices on Finding Clinical Trials. To register, click here.

If you'd like to proactively advertise an upcoming event where consumers are welcomed, then get in touch.