Research4Me Newsletter Dec18

If you've missed any of our consumer/researcher stories, newsletters, etc, you can always catch up via our Latest News. (And I hope to release a video reflection on the year before the New Years champagne is popped, so keep an eye out on our social media for that).

I am so grateful for the support, advice and contributions so many of you have made this year to our initiatives, and other opportunitiues our network have offered and I look forward to what we can achieve together in 2019.

So with that, all that remains is to wish you and those you care about a restful, safe, happy holiday season, and an exciting, healthy 2019.

Till we meet again in 2019, best wishes... Janelle.

In case you missed our Latest News.....

Since the last newsletter, we published interviews with a researcher and consumer representative involved in the ENDIA study, talking about the issue of engaging the public in research, the ways the ENDIA team have involved consumers in the largest study into understanding the cause of Type 1 diabetes in Australia, and the value of that involvement. You can catch up on Part 1 and Part 2 of the interviews online.

We also sponsored the Australian Clinical Trial Alliance (ACTA) annual summit, presented at it on ACTA's Consumer Engagement Group work and supported the attendance of a couple of consumers to it. To our mind, all the consumers that attended demonstrated in spades the value of including their perspectives in the discussion around challenges and ways forward in clinical research with their insightful questions and comments throughout the event. Presentations from the summit are available at the link provided, for those interested.

And, in case you've missed it, we offer researchers the opportunity to advertise for free any research they are looking for participants for, or patient/carer/consumer input into every Tuesday night, 5-10pm AEDT in our Facebook Group as part of out #TrialsTues initiative. Visit the website or contact us if you would like more information.

Did you know...?

Research4Me all about increasing awareness of, and access to, opportunities to get involved in research. To demonstrate our commitment to this, we make available to researchers the opportunity to advertise for free any medical research they are looking for participants for, or patient/carer/consumer input into every Tuesday night, 5-10pm AEDT in our Facebook Group as part of out #TrialsTues initiative. Visit the website or contact us if you would like more information.

Here's 10 articles we thought you might find interesting:

Trials Save Lives. We love this new campaign from the ANZ Breast Cancer Trials group sharing stories and video's of former trial volunteers speaking with women who have benefitted from the results of those trials.
NIH-Clinical trials and You: Personal Stories Volunteers and Researchers involved in US NIH clinical trials share their stories.
Global Patient and Public Involvement Network: The vision and mission The time is right to bring current knowledge and expertise together to create a world where patient and public involvement in health research is the norm.

Commentary: How Patients Have Transformed A Medical Meeting About Breast Cancer A reflection on the evolution of the San Antonio Breast Cancer Symposium, the world's largest annual conference devoted to breast cancer from a physician only meeting, to one where patients, researchers and clinicians now sit side by side. By speaking up, advocates at the meeting have shifted the direction of breast cancer research.
Impact of patient and public involvement on enrolment and retention in clinical trials: systematic review and meta-analysis. The findings add weight to the case for PPI in clinical trials by indicating that it is likely to improve enrolment of participants, especially if it includes people with lived experience of the health condition under study. The linked BMJ editorial and opinion pieces are also worth a read.
2018 in review: How patient centricity led to new drugs that tackle unmet need. It was a year of new hope for millions of people living with underserved conditions, as the pharmaceutical industry made huge strides towards tackling unmet need. Collaboration, innovative trial design and listening to the patient voice have led to a slew of proposals, trials and even approvals of medicines for all-too-often forgotten conditions.
Collaboration created the cornerstone of better clinical trials – now, it’s time to build. Throughout the year, progress – particularly in the areas of mobile technologies, real-world evidence, and patient engagement – resulted in new, tangible building blocks for constructing the future of clinical trials.
Our Door Is Open: FDA Puts Patients First The US FDA talks about their efforts to increase their patient engagement and 'advocate for the advocates', through their Patient Affairs Staff .
Four steps for more patient centric trials Adopting a patient centric mentality doesn’t just happen overnight. Here are four steps which can help organisations move towards this approach.

How the IoT is changing clinical trials The IoT is changing the process of clinical trials, making them more efficient and cost-effective, and speeding up the time it takes to research new treatments.

Here are the trials listed on the ANZCTR as currently recruiting in Australia, with a start date between 22Nov-20Dec18:

Targeted Therapy for Sleep Apnoea: A Novel Personalised Approach. This interventional study in NSW and SA is looking for 65 people aged 18-80 with obstructive sleep apnoea
A study to evaluate the safety and tolerability of an investigational transdermal patch in healthy volunteers. This phase 1 interventional study running in Sydney is looking for 12 healthy people aged 30-65.
Preventing Adverse Child Development Following Maternal Depression in Pregnancy. This interventional study running in Melbourne is looking for 230 women aged 18+ that are less than 30 weeks pregnant, diagnosed with certain depressive disorders.
A prospective, observational, longitudinal study to determine key factors in the onset and progression of myopia in children. This observational study running in Sydney, China, Vietnam and India is looking for 500 young people aged 4-15 years with vision of 20/40 or better with or without correction.
Cool Kids Taking Control Online Program for Children Experiencing Bullying and Anxiety. This study is looking for 128 children aged 7-12 years from across Australia, including from both regional and rural areas, that report being bullied 3x or more in the last school term and have an anxiety diagnosis.
An evaluation of the effectiveness and feasibility of a cognitive remediation program in a residential substance use treatment facility. This study is only open to 100 people aged 18+ that are residents at Wattlegrove residential rehabilitation facility in Orange, NSW from Apr-Oct 2019.
A Phase 1 Study to Evaluate the Safety of CBL-514 Injection on Convexity or Fullness of Abdominal Subcutaneous Fat in Healthy Volunteers. This treatment study in QLD is looking for 40 healthy people.
A patient satisfaction evaluation study of Bemfola (recombinant FSH) administered with a 12mm needle or a 4mm needle in the treatment of subjects undergoing invitro fertilisation (IVF). This treatment study in Melbourne is looking for 112 women with fertility issues aged 18-38years.
BCT 1702 (CHARIOT): Checkpoint therapy in triple negatIve breast cancer. This treatment study running in ACT,NSW,QLD,WA,and VIC is looking for women aged 18+ with high-risk primary triple negative breast cancer who have had anthracycline-based chemotherapy.
The effect of sugammadex on respiratory complications and patient satisfaction following surgery. This study is looking for 976 patients aged 18+ presenting for non-cardiac surgery with a planned operative time of over 2 hours at hospitals across Sydney NSW.

Research4Me has no relationship with any of these projects and provides this information as a public service to increase awareness of the diversity of research needing participants. If you are interested in more information, please click the links and contact the researchers listed directly.

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