A little about what we're up to...

The last month has been a great month for meeting new people and talking about getting the public more involved in clinical trials. 

On 24th August I chaired a session at the ARCS Australia annual conference for therapeutics industry professionals in Australia on the role consumers can play in clinical development of new products. Some great insights were shared by this wonderful group of women about the challenges and learnings in this area.

On Sept 1st @Res4Me moderated the #AusCT twitterchat on involving kids and young people in clinical trials. You can review a summary of the discussion online. We were also fortunate a couple of weeks ago to have the opportunity to make a short appearance in a story with one of our mentors, Christie Whitehill of Tech Ready Women, on Sunrise.

We published a clinical trial diary, unedited, that was shared with us by a member of the community that is keen to help others know what being in a clinical can be like. If you have your own clinical trial diary or story that you'd like to share with others, please get in touch. Everyone that shares their experience helps others know what to expect or ask about.

And finally (phew!), we delivered our first training session last week to help research professionals and the public learn to work together to create better clinical trials.  If you'd like a peek into that training, check out the video online.

As a social enterprise, we are keen to support consumer organisations championing medical research. So we were pleased to distribute the first donations to The Sanfilippo Children's Foundation, Love Your Sister and The Unicorn Foundation as a thankyou for those that took the time to fill in our surveys to the end of August. The surveys are still open if you want to raise more money for these 3 organisations.

It turns out Sept has been a big month for two of these organisations.

The Sanfilippo Children's Foundation has been nominated as a finalist in the Research Australia Health and Medical Research Awards (to be presented Oct 5) and we wish them every success. The Foundation's success in raising funding and attracting a gene therapy clinical trial to Australia is a wonderful example of what is possible when committed members of the public and industry work together to advance medicine for people with a rare condition. And of course, we are delighted to have had their founder, Megan Donnell, share her experiences with clinical trials via our #WhyClinicalTrialsMatter blog, and the conference above.

Australia lost an inspiring champion of life and medical research, when Connie Johnson of Love Your Sister gained her angel wings this month. Connie, her brother Sam and the whole Love Your Sister community are inspiring for their support of each other, cancer research and demonstrating how consumers can make a real difference in medical research. For those that don't know, as I didn't, beyond her breast cancer advocacy and Love Your Sister, Connie played an integral role in advocating for the $20 billion Medical Research Future Fund. This fund is a huge legacy that will no doubt lead to research that improves and saves lives for many generations to come.  The Australian Association of Medical Research Institutes (AAMRI), among others, published a wonderful tribute to Connie, that I encourage you to read if you haven't already seen it.

Connie was a very brave, public figure, but there are many in our community on their own difficult health journeys that also give much to medical research... financially, physically, emotionally and with their time, energy and connections. I was reminded of that this week when someone was unable to attend a meeting to talk about Research4Me because of a medical appointment for a challenging turn in her cancThankyou to everyone that contributes to clinical trialser. This person still took the time to sent me a note to apologise for missing the meeting because of news that had 'kind of put (her) plans out for the week' and to reiterate her interest in being kept informed and involved. It is generous, selfless people like this that inspire me daily to make sure people are aware of clinical trials, and that clinical trials succeed, quickly, and deliver answers that matter and make a positive difference. So thankyou to all those that do their bit to advance research, treatments and cures, both publicly and privately.

Coming up in the next week, you'll see a big change to our website with lots more information about clinical trials. It's the next step in our journey to creating a fully interactive online community supporting clinical trials that I hope you will join in with. 

With that, I will take a breath and leave you to look over the rest of the newsletter. If you have any suggestions or ideas for how Research4Me can better support your involvement in clinical trials, please reach out. We are nothing without you.

                                   Janelle Bowden, Founder, Research4Me
Have you completed our survey yet?

We want to understand your experience, whether you you have, or have not taken part in a clinical trial.
For your time, we will donate $5 toward one of 3 Australian organisations:
The Unicorn Foundation, The Sanfilippo Children's Foundation and Love Your Sister.

Trial Spotting

Each month we try to demonstrate the diversity of clinical trials by showcasing 5 of the clinical trials listed as currently recruiting participants on the Australian New Zealand Clinical Trials Register. Please visit the links provided and contact the researchers directly if interested in these trials, as we have no links with any of these trials.
  • A study to test the safety and efficacy of a new device named the Endocuff-vision, for surveillance for cancer and dysplasia in inflammatory bowel disease. This prevention-focussed clinical trial is running in Victoria.
  • A study looking at the role of Vitamin D in Fertility and In Vitro Fertilisation (IVF) Outcomes. This diagnostic trial is open to patients attending the clinic running the trial in Western Australia.
  • Using cognitive interviews with parents to improve the design of short food questions measuring young children’s food intake. This trial is being conducted from Adelaide, but is available to parents across Australia to participate.
  • TrueNTH solutions: an integrated multi-component intervention to improve the lives of men with prostate cancer in Australia. This treatment trial is currently open in the ACT, NT, QLD, SA, TAS, and VIC.
  • A trial to evaluate the effect of FLX-787 ODT on Motor Neuron Disease. This treatment trial is currently open in NSW, VIC, and QLD.

What We've Been Reading...

Here's a selection of the stories we've enjoyed reading recently that talk to explaining clinical trials and participants experiences in them, as well as the value or public and patient involvement in research and development of new treatments. Feel free to share with us other stories you think this community might enjoy via our Facebook page, or by tagging us on Twitter (@Res4Me).

ClinicalLeader: 4 Ways To Listen Like A Linguist — And Improve Trial Inclusion
Summary: Linguists working in medical research provide a scientific lens from which to analyse how patients think about, talk about, and live with a given condition, symptom, or treatment. Listening like a linguist involves asking the right questions and synthesizing patterns of meaning from the answers provided. So how do you do it?

NEJM: Perspective: Tragedy, Perseverance, and Chance — The Story of CAR-T Therapy
Summary: The approval is probably the first of many for CAR-T products. The emergence of CAR-T therapy, like most scientific advances, reflects the incremental insights of hundreds of scientists over decades. The story of CAR-T therapy says as much about the methodical nature of scientific progress as it does about the passions that sustain it.

ResearchInvolvement: The impact of involvement on researchers: a learning experience
Summary: The impacts of involvement in research are often described in terms of the difference made to the research, the people involved and less frequently the researchers. This paper focuses on the researchers’ experiences of involvement, based on an evaluation of a pilot project supporting patient/carer involvement in research at Parkinson’s UK.

WebMD: Connecting People to Clinical Trials
Summary: Interview with Dana Dornsife, founder of the Lazarex Cancer Foundation — an organization that helps cancer patients get access to clinical trials.

RareDiseaseReport: A Paradigm Shift in Clinical Trials is Occurring 
Summary: At the Global Genes Patient and Advocacy Summit, Rare Disease Report spoke with Kent Thoelke of PRA Health Sciences about how clinical trial organizations are changing the way patients are being involved in clinical trials.

PharmaPhorum: Clinical trial summaries for lay people – unpicking the guidance
Summary: Theo Raynor examines the EU’s guidance document and suggests ways to create clinical trial summaries that the public can understand.  

Cochrane: Training Module for involving people in systematic reviews
Summary:  Involving People is an online learning resource for systematic review authors to support you in getting people involved in the production of your reviews (including patients, their families and carers, as well as other members of the public and health care teams).

FasterCuresFrom Aspiration to Application: 5 Years of Patient-Centricity 
Summary: 2012 was a landmark year for greater involvement of patients in research, development, and delivery of medical products and care with the US FDA signing into law a requirement to foster patient-focused drug development. Five years later, the handful of organised activities to foster patient engagement has precipitated a veritable “gold rush” of endeavors to construct a science of patient input.

ClinicalTrials: Characteristics and trends of clinical trials funded by the National Institutes of Health between 2005 and 2015
Summary: The objective of this analysis was to describe characteristics and trends of clinical trials funded by the National Institutes of Health over time and by Institutes and Centers of the National Institutes of Health.

CenterWatch: Study: Americans would participate in clinical trials if doctor recommended
Summary: A survey conducted by Research!America found that 81% of people would be likely to participate in a clinical trial if it was recommended by their doctor, up 9% from 2013; however, less than 20% report that their doctor has ever talked to them about the possibility of participating in a clinical trial.

JCRBP: My Clinical Study Experience with Focused Ultrasound - The patient's voice
Summary: One person's experience participating in a clinical trial.
We hope you have enjoyed the September Newsletter.  

Please share it with anyone you think might find it of value, sign up if you didn't get it directly, and let us know if you have suggestions for improving the newsletter.
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