The latest Australian clinical trials and ways to get involved in research.
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AccessCR-CCReW News and Opportunities 2Mar2023
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Thanks for you patience in waiting for this weeks newsletter. It's late due to one of those quirks of a service provider changing their systems with unintended consequences for their clients. If you are now receiving this, that's thankfully been sorted.

I know many of our community identify as people living with or supporting those living with a rare disease. In celebration of this week's Rare Disease Day, I'd like to wish you well in your efforts to advocate for recognition, research and support of the rare disease communities you are part of. We know now that rare is not rare - rare is many. And as we learn more about the genetics behind even the most pervasive health conditions, I truly believe we will all be rare one day.  So I take my hat off to the rare disease communities that are innovating and paving the way for how research and trials many need to change in the future to deliver the evidence for what personalised medicine and care will benefit future patients.

A quick reminder to conference organisers that Belberry's newest round of participant engagement grants remains open for applications until 10 March 2023. Please think about how consumers could be integrated as speakers and attendees, enriching the experience for consumers, but also for the professional attendees that need opportunities to engage with and listen to consumer voices.

As always, there are lots of interesting opportunities and resources you might like to check out below. I'd particularly like to draw your attention the the ConViCTion work listed in the Stories section. And until we meet again, wishing the world is kind to you.

                                                        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 30Jan - 14Feb23  not previously listed here, as at 14Feb23.

Please contact researchers directly through the listings as we have no connection/involvement with these studies. If you do contact a researcher or join one of these trials please drop us a note so I know whether providing this listing is useful and helping people find trials.

If you are a researcher that wants to tell people about your recruiting trial, please contact us (first listing free, subsequent listings for a fee).

Over the past 12-18months, I've been involved with a project team supporting a consumer advisory group for clinical trials in NSW called ConVICTioN. They were tasked with coming up with something that might improve clinical trial awareness and participation in NSW. After much discovery research, they found many of the materials available share the benefits researchers believe clinical trials have, rather than the benefits consumers experience from participating. 

ConViCTioN set about producing some materials that were strictly consumer led and delivered messages. These materials have been recently launched for anyone to use. Here's a blog post I've written that shares my experience of working with this group, with links to the resources they have developed. I encourage you to take a look at the resources, and importantly, use them to help raise awareness of clinical trials and encourage people to look into them further.

We are always looking for stories to share on our blog and socials from trial participants, consumers involved in research or the carers and family that help support people do either, or researcher involving consumers in their work. If you'd like to share yours, please get in touch. And, feel free to catch up with stories already shared on our blog or Facebook Page.

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

If you'd like to proactively advertise a consumer research involvement opportunity or event, or would like to engage our help or advice on an activity, then please contact AccessCR.

Here's a few resources (old and new) you might be interested in:

Help us spread the word and get more people involved in research.

Help speed up and improve research by sharing this newsletter with your family, friends and colleagues and letting them know about the research looking for participants and consumer research partners. If there is anything we can do to improve the newsletter, please get in touch.  

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

Hear about consumer involvement opportunities, events and resources first, or get involved in conversations about research by joining our private facebook group - Research Gamechangers.

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