Research4Me Race to Research Newsletter Mar18

The start to the year has been busy with preparations for the 3 events we are holding at the start of April:

A ThinkTank about publicly available clinical trial information on April 11 for patients, carers and those professionally involved in clinical trials
The Ask About Clinical Trials awareness campaign encouraging people to have a conversation with their doctor about clinical trials between 1-14 April.
A workshop at the NSW Patient Experience Symposium Apr 9 exploring the experience of participants and consumer representatives involved in clinical trials, and how to improve it.

The first two events are described in more detail below. We hope that we will meet you in person or virtually at one of these events.

In cased you missed it, our online community launched at the end of November. Its a work in progress but we hope it becomes a useful forum for people to network with others for information and support around clinical trials, and that it makes it easier for researchers to engage the public in their clinical research.

We thought deeply about whether to develop a standalone community or Facebook group to serve this purpose. Given the recent Facebook issues, we hope users will come to appreciate the value in connecting in a safe space outside of Facebook. Time will tell though if users ultimately want to connect via a Facebook group, or via the alternative community.

You, our community, will decide what happens next.

Registrations are now open for our 11th of April ThinkTank in Sydney (and online).

This meeting aims to bring together patients, carers and those with a professional interest in clinical trials to look at the issues surrounding the public information available to people looking for trials, and how it might be improved.

With the assistance of our sponsors, The Sydney Partnership for Health, Education, Research & Enterprise (SPHERE) and TrialDocs, we have been able to make registration for this full day event affordable for those professionally interested in clinical trials, and free for members of the public with a related interest in this topic. With only 2 weeks to go, don't miss out on your chance to be part of the conversation.

Click Here for More Information & Tickets

If you have ever looked for a clinical trial, you can help inform the ThinkTank discussion by completing
a short 5min survey, anonymously if preferred. De-identified results will be shared at the ThinkTank.

47% of Australians are happy to hear about clinical trials from their GP presents, yet less than 10% of the population are involved in trials, and 80% of clinical trials struggle to find volunteers, slowing down how quickly new treatments become available.

This April, we are leading a team running an awareness campaign empowering people to ask their doctor about clinical trials, before they need to. We are hoping people will also feedback on their experience, and encourage their family, friends and networks to get involved.

If you have never had a general chat with your doctor about clinical trials, now is the time. The Sydney team are competing with 6 US-based teams to see which event between 1-14 Apr gets more people involved. By participating and sharing the #AskAboutCTs campaign online, you'll not only potential uncover care options you hadn't considered, you will be helping demonstrate Australia's interest in clinical trials to US-based clinical trial organisations that may be considering where to place their trials.

The above video outlines the campaign idea. Visit AskAboutClinicalTrials.com for full details.

We like to showcase the diversity of clinical trials looking for volunteers. Here are a 5 trials that recently began recruiting:

Treating hypoglycaemia in newborns with Glucagon And Diazoxide: The Glad Study. An Adelaide trial looking for 100 participants.
A feasibility trial comparing a behavioural intervention, melatonin and usual care for people with dementia and sleep disturbance. An Adelaide trial looking for 30 participants.
A trial to assess the efficacy of using the injection site desensitiser device Coolsense (R) on pain and anxiety in Australian adult Blood Donors. An Melbourne trial looking for 450 participants.
A trial of App-Based Supplemental Exercise During Inpatient Rehabilitation. A Sydney trial looking for 300 participants.
A Phase Ib/II Trial of Ipilimumab-Nivolumab-Denosumab and Nivolumab-Denosumab in Patients with Unresectable Stage III and IV Melanoma. A Melbourne trial looking for 72 participants.

Research4Me has no links with any of these trials. If you are interested in more information on them, please click the links and contact the investigators listed directly.

Here's links to a few stories you might find interesting:

Trials and Tribulations: Navigating the Clinical Trial Space. Finding her way into a clinical trial took a lot of research for one patient with ovarian cancer. Now, she’s guiding others.
Two stories--of taking part in clinical trials, and of serving as a voice for patients among scientists who run them--highlight how the advances in cancer are built on the trust between those living with the disease and the clinicians on the frontiers of care.
"One Person Closer" Campaign Launches to Inspire & Empower Conversation between Healthcare Professionals and their Patients on Clinical Trial Participation
On the 20th March, UK-wide standards for public involvement in health research were released.

There are lots of ways you can contribute your experience to others and get involved in our work. There's everything from speaking opportunities, to surveys, videos, sharing your story via out blog, being a part of our events or contributing to the community group forum(s). New ways to get involved are being added all the time, as people start to get to know about us.

Keep an eye on our current opportunities, events, join our community or follow our social media activities.

We want to help you solve your clinical trial issues, so let's figure out together how to do that.

If you have suggestions, or feedback on what we are up to at any time, we love to hear it. So don't be shy.

Until next time.... Ask your doctor about clinical trials.