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AccessCR-CCReW News and Opportunities 5 Jul 22
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News
Dear

In the past fortnight, I've been part of a consultation group providing feedback on standard fields for inclusion in the WHO-International Clinical Trials Registry for reporting of clinical trials. Its an ongoing process, and what is clear is that there is a balance to be sought in the type of information that should be included. I'd love to hear what the CCReW would be interested in seeing reported from clinical trials on registries, so feel free to drop me a line if you have any suggestions.

Given Australia's current concept for a National Clinical Trials One Stop Shop includes a system that would prefill a new generation trial registry, it will be important to consider how uploading and sharing of trial results may also be facilitated by that system?
In other news, CCReW member Vanessa recently shared her experience looking for and participating in a clinical trial in a webinar for other people to learn from. Read more about why she did this, and access the webinar and resources here.

In closing this week, with terrential rains yet again lashing parts of NSW and QLD, I just wanted to send my heartfelt prayers and support to those facing their third flood and cleanup this year. Be safe, and I wish you the resilience to get through yet another challenge. If anyone is looking for a way to help flood victims, these NSW and QLD government websites provide some useful links.

Wishing the next fortnight is kind to you all.

                                                        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 20 June 2022, as at 4Jul22.

Other trials (posted at researcher's request) - Once-off free listing:


To learn more about any of these studies, please contact the research teams directly (details will be in 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 listingof a newly recruiting study is free, and subsequent listings are available at a small cost. Advertising your trial will help CCReW know about it, and help us sustain this free CCReW support service.

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

Our concept 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.

Telling us about your experience will also help us identify opportunities for improvement, or centres giving great experiences to participants that others might be able to learn from.



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

  • Dr Hazel Jenkins, Macquarie University NSW, is looking for a health consumer partner to be an associate investigator on a Low Back Pain project. This is an opportunity to join the research team on a grant application for research funding through the MRFF Clinician researchers scheme. The project will investigate whether a patient education intervention can reduce unnecessary imaging and improve management of low back pain in general medical practice. For more information, email: hazel.jenkins@mq.edu.au
  • Via Dr Dawn Richards, Canada: Our team is looking for your insights about COVID19 recommendations and how they're written & presented. This is open to anyone >21 years of age (anywhere in the world). surveymonkey.com/r/HSMPN86
  • Join in shaping the future of patientengagement and patient experience data. Anyone can participate in a public consultation being conducted by PFMD.org for the first Global Navigator for patient experience data. Click here for more information.

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

If you're having trouble understanding some of the clinical trials terminology, check out AccessCR's clinical trials jargon buster.

We've also got lots of other clinical trial resources you might find interesting on AccessCR's Knowledge page, like a short Clinical Trials 101 guide for clinicians looking to support their patients around clinical trials, and a checklist of questions people might like to ask the research team when they are considering a trial. .




The following are upcoming research/trial-related events we and others may be running where consumers are welcomed.
  • Join White Coats Foundation's forthcoming webinar - "What is Consumer Led Research". Tune in on Wednesday, July 13th @1pm. More information is available here.

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

Do you identify as a member of the CCReW,
or would you like to discuss how you can help support CCReW?


Feel free to contact us anytime at CCReW@AccessCR.com.au. Please share this newsletter with people that might have an interest in taking part in or sharing their experience with researchers to improve trials.

If you were forwarded this email and would like to subscribe to receive it each fortnight, click below.



If you have questions, want to discuss research participation or involvement issues, or have resources and involvement opportunities to share in between newsletters, feel free to jump into our Facebook Group, and email.


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