Research4Me Newsletter July 2019

Dear ,

The last month has been busy with events and presentations, including the ALTG/Lung Foundation Consumer Research Education Day, the ARCS conference, and the ANZCA Clinical Trials Network Strategic Research Workshop (see some of our photos from these events below). Next month I am looking forward to the SW Sydney CCP Conference where they will be launching their Health Literacy Framework, and I will have the opportunity to share my perspective on the value of research literacy as a pillar of health literacy.

What I get most out of these events is hearing the curiosity and commitment of people in the community to/about research, and learning how researchers and patients, carers and their broader networks are striving to achieve better research and therapeutic outcomes, together. It gives me the motivation to find ways Research4Me can break down silos and bring these different stakeholders together. For all of you who inspire me, thankyou.

Have a great month ahead. Janelle.

We enjoyed getting to meet and chat with some of the consumers who attended the ARCS conference as presenters and inaugural consumer scholarship holders, some of whom are part of our community. One of those, Melinda Seed, shared with us a blog post she wrote reflecting on her impressions and experience of the conference. As an aside, Melinda was also one of the top 'tweeters' for the conference, which just shows how actively consumers can contribute to and help disseminate information, if invited in.

Our Facebook Group has been slowly getting more active as a place we and other members share content/opportunities to, ask questions, and have discussion that doesn't appear in our other channels. It's for people like you interested in learning more, getting help, sharing with others around research. Anyone is welcome - the public and research community - so why not check it out and see what you might learn or share that could help others. And, if Facebook is not your thing, get ready for the imminent relaunch of our website community where we hope similar sharing and discussion will happen.

Our 2-page acronyms guide is now available for anyone struggling with abbreviations used in the Australian Therapeutics industry. We created it to help consumers attending the ARCS conference for the first time, but found it was also being picked up by lots of the industry professionals attending too. It just shows we all need help understanding the language at times. And don't forget, we also have a more comprehensive Clinical Trials Jargon Buster and other resources/information you might find useful on our Publications page and in our Knowledge Centre, which you can find via our website Resources menu.

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

The Clinical Trial I Participated in Was a Positive Experience. A person with MS reflects on her clinical trial experience.
Understanding clinical trials. A short explainer from the Australian Pancreatic Cancer Genome Initiative.
'Basically I was cooked': Australian actor Tom Long cancer-free after medical trial
Be Health Aware. A resource to help improve health literacy from the Consumers Health Forum of Australia.
Community Engagement is key to clinical trial recruitment and diversity. A nice reflection on the issues and need for appropriate community engagement from trusted sources.
Virtual Clinical Trials: A New Model for Patient Engagement. Summary of a panel workshop exploring virtual clinical trials.
Towards Patient Centricity: Pfizer: A new series looking at how different companies are turing patient centricity into a reality.
UK ABPI guidance on patient engagement: Reflections on a sourcebook released in June by the ABPI to help pharma companies embrace patient engagement
Why pharma isn't collaborating with patient organisations as much as it should. A discussion of recent survey findings.
CTTI and FDA Workshop explores patient partnerships at every step of the research process. A summary of the workshop and links to the workshop report.

There are 38 studies that starting recruiting in Australia & New Zealand during July 2019 as found on the ANZCTR 23Aug19. Click on the links below if you are interested in further information and the contact people for any of these studies:

Identifying effective doses of an inhalation powder to acutely improve cardiopulmonary haemodynamics in people with Pulmonary Arterial Hypertension.
Kisqali Access Registry for Metastatic Breast Cancer
Phase 1 Study of the Pharmacokinetics, Safety, and Tolerability of XG005 in Healthy Volunteers
An evidence based health evaluation of the FRNSW Tactical Athlete Resilience Program
Human muscle, core and skin temperature responses to high-intensity interval and resistance exercise
Testing the flu@home test (QuickVue lateral flow test for influenza and RDT application) for patients with an influenza-like illness visiting a general practitioner vs. PCR gold-standard test for influenza.
Short-term ambient temperature changes and physiological performance in healthy volunteers.
A new clinical tool to assess fitness-to-drive in obstructive sleep apnea
Improving Quality of Care Through Detection of Complexity Amongst Older People in a Community Setting
A Phase I, Randomised, Double-Blinded, Placebo Controlled, Safety and Pharmacokinetic Study of (Z)-Endoxifen in Healthy Female Volunteers
Effect of wholegrain structure on metabolism and composition of breath volatile organic compounds in adults with normal glucose tolerance or type 2 diabetes mellitus: a randomised crossover study
The effect of exercise format and social environment during 12-week training on post-exercise food intake in inactive volunteers
Rural Patient Experiences in Accessing Acute Paediatric Appendicectomy
The impact of continuous terlipressin infusion on muscle, nutrition, ascites and inflammation in end-stage liver disease
The effect of CYP1A2 genotype on the ergogenic effects of caffeine during anaerobic exercise
Respiratory Rate in patients with Respiratory Failure in response to Nasal High Flow Therapy delivered via a single sealed nostril
Omega Kid Study: Investigating the effect of omega-3 supplementation for self-regulation in children aged 3-5 years old
A Phase 1 Open-Label, Parallel-Group, Two-Treatment, Single-Dose Study to Evaluate the Pharmacokinetics of GS-9674 and GS-0976 in Subjects with Normal Renal Function and Severe Renal Impairment
Low-load resistance training with blood flow restriction: a novel approach to improve muscular fitness and functional abilities in older people
An observational study investigating and auditing the safety, tolerability and further efficacy characteristics of a pharmaceutical grade cannabis medicine (NanaBis™) prescribed to eligible patients for the management of cancer related or non-cancer related pain in general and specialty medical practices
Assessment of Safety and Performance of the Radio Frequency Catheter System to Isolate Pulmonary Veins in the Treatment of Paroxysmal Atrial Fibrillation Control Study
Living Well after Breast Cancer: supporting younger women to manage their weight with a partial meal replacement diet
Normal saline versus heparin flushes in paediatric oncology to prevent occlusion
Parent and Child Cognitive Behavioural Therapy for Anxiety Disorders
CardiacRehabPlus: Innovation to improve outcomes for TIA and cardiac rehabilitation patients
PREBO-6: Prediction of childhood Brain Outcomes in infants born preterm using neonatal MRI and concurrent clinical biomarkers
Benefits of high intensity interval training in people with fibrotic interstitial lung disease
A randomized-controlled trial evaluating EEG neurofeedback training adjunct to trauma counselling for reducing posttraumatic symptoms in adults with a refugee background
Prospective trial assessing the additive diagnostic value of 68Ga-PSMA positron emission tomography (PSMA-PET) in men scheduled to undergo diagnostic biopsy for suspicion of prostate cancer.
Low-Fat Versus Ketogenic Diet In Alzheimer’s Disease
The use of a virtual reality headset for 4 year old immunisations to reduce pain and distress
A study to determine the safety and tolerability of an intravitreal steroid in the treatment of dry Age Related Macular Degeneration
A topical cold sore treatment containing St John's Wort, Calendula and Copper
A comparison of the development of collateral blood vessels in participants with branch retinal vein occlusion and hemicentral retinal vein occlusion
A Study to Evaluate the Safety and Efficacy of MEDI8897 for the Prevention of Medically Attended RSV LRTI in Healthy Late Preterm and Term Infants
A Study to Investigate the Safety and Efficacy of ABBV-105 and Upadacitinib Given Alone or in Combination in Participants With Moderately to Severely Active Systemic Lupus Erythematosus
A Study to Evaluate the Safety of MEDI8897 for the Prevention of Medically Attended Respiratory Syncytial Virus(RSV) Lower Respiratory Track Infection (LRTI) in High-risk Children
Dose-Ranging Efficacy and Safety Study of Topical Rapamycin Cream for Facial Angiofibroma Associated With Tuberous Sclerosis Complex

Research4Me has no relationship with any of these studies and provides this information as a public service to increase awareness of the diversity of research needing participants.