Research4Me Newsletter July 2019

Dear ,

Hello and welcome if this is the first time you are getting our newsletter, for joining our community. I look forward to engaging with you to learn how we can support you better.

For those that have been wondering what we've been up to recently, since our newsletters have taken a back seat, it's been a time for thinking about what Research4Me is and does, building relationships, better understanding your needs & helping solve problems as you will see in the highlights below.

Our social media following and Facebook group has been steadily growing and I've enjoyed seeing the discussion there grow. We're always listening out for the issues consumers and the researcher/ industry face to inform our direction, and still remain firmly of the belief that there is a need for better infrastructure, funding and support to bring stakeholders together and improve research success. Research4Me will continue to be an advocate and platform for making that happen.

At the end of April, we formally launched the concept of our Tribe and our new Referral Program (see more below, including a once off speciall offer), and I am excited by the possibilities provided by these collaborations.

As an example, the relationship with ARCS Australia is already driving change and benefits, giving consumers a chance to attend their conference in August free for the very first time. I'd encourage any consumers interested in better understanding the therapeutics industry and seeking to collaborate constructively to improve therapeutic development (from idea, to research, to regulatory approval and listing on the PBS) to consider applying before the deadline - 9am 15July - more information below).

There are interesting things happening with all 7 of our Tribe including a Consumer Education workshop with Lung Foundation Australia & Australian Lung Cancer Trials Group next week. I look forward to sharing more of these opportunities with you in due course, and invite you to formally join our Tribe so we can collaborate and share what you are up to, or at least join our Facebook group which is the first place we usually share these opportunities.

Research4Me is nothing without its community. As you can never be too sure what's just around the corner, I wanted to take this opportunity to "smell the roses" and say how grateful I am to each of you that generously share your time, experiences, problems, insights, and advice, and help promote what we are trying to achieve. You make a difference and keep me inspired to push forward with Research4Me.

Have a great month ahead, and please say hello if we cross paths at an upcoming event. I always love to meet members of our community and learn about your passions. And please share this newsletter if you think others might be interested.

Janelle.

ARCS Annual Conference Consumer Scholarships

Applications close 9am 15 July for health consumers interested in attending the ARCS Annual conference in Sydney on the 6-8 August. This is a professional development conference for those that work in the therapeutics industry (for example, non commerical and commercial clinical research professionals, regulatory and safety specialists, health economics and medical affairs professionals) to upskill their knowledge and understanding of processes, improving how they work, and the future direction of the industry.

For the very first time, ARCS is offering consumers the opportunity to attend the conference at no-charge, through their consumer scholarship program. It only takes a few minutes to apply, and there are plenty of scholarships on offer, so you have a good chance of success. Learn more about applying here. I encourage you to take a look at the conference program, as there will be a number of sessions talking about the role of consumers in the industry, how to work toward better partnership, and a consumer networking area so you can meet other health consumers attending.

Travel scholarships are not available through ARCS or other partners at the moment, but Research4Me is offering to cover up to $750 in travel costs for one person in our community who receives a scholarship from ARCS. For noting, you must agree when you apply for the scholarship that you have the funding to support your travel, so do not apply on the basis that you hope to get the Research4Me travel support, and run the risk that someone else may miss out on the ARCS scholarship.

We'll be updating the Opportunities page of our website with how to apply for this travel support on 15July, to avoid confusion with the ARCS scholarship application process, which is separate to Research4Me.

Recent Highlights ...

It's been a busy few months with the launch of new services, events, and getting to know our community better. Here's a quick sample of some of that action.

We attended and exhibited at the NSW Patient Experience Symposium, and connected with some of our social media connections in person at the South West Sydney Health Beyond Research & Innovation Showcase. Janelle attended the launch of the Broadening the Evidence report commissioned by BMS which advocates for better consumer engagement in the critical piece post research, where 'health technology assessments' are done to determine which products the government will subsidise.

We participated in the workshop held by ACTA and CT:IQ to help inform development of the consumer engagement toolkit web portal they are developing. A survey was distributed for the ANZ Clinical Trials Registry on how to improve its search function, and Research4Me attended the subsequent workshop that discussed the feedback and possible ideas. It is great to see progress subsequent to our ThinkTank held last year on the difficulties people have searching for clinical trials and even better to see Thinktank attendees re-consulted. Our trademark was registered and the website rearranged/updated to (hopefully) clarify our purpose, services and website navigation. If it's still not clear, please let us know!

There's been lots of advocacy, finding trials for people, and preparations for upcoming events, as well as discussion around how our community might contribute to an upcoming govt consultation. Stay tuned for the immenent reopening of our website community too, especially for those that are still interested in sharing and engaging online off-Facebook.

Join Our Tribe

If your organisation committed to increasing public and patient awareness, participation and involvement in health and medical research?

Join our Tribe to be publicly recognised on our home and Tribe website pages for your commitment, and to explore with us how together we can leverage our experience and activities to build capacity in this area. Our Tribe is a great platform for learning, collaboration and leveraging to help empower the public, patients and carers to get involved in research, improve equity of access and diversity of participation, build the consumer workforce needed to inform research, and make sure tomorrow's care and treatments address the needs of patients and their personal communities. We hope you will be a part of it.

Working with patient research partners: collaboration and considerations - A Youtube video where a PhD student shares her perspective of working with patient partners. (9mins).
Examples of co-producing research. A new report from NIHR Involve
Making Patient Involvement Meaningful. A summary of discussions had at the recent UK Pioneering Partnerships conference
HealthCare Consumers Association Consumer-Based Research Framework - the framework used by HCCA (ACT) to guide their internal approach (and explain it externally) to consumer-based research
How Precision Medicine Impacts Patient-Centricity in Clinical Trials
Stop Talking & Start Taking Action: 3 Ways To Improve Patient Centricity In Clinical Trials
BMJ: Sharing of clinical trial data and results reporting practices among large pharmaceutical companies: cross sectional descriptive study and pilot of a tool to improve company practices

Become a Referral Partner and Benefit

Our vision is having one community of diverse health interests and research experiences creating the critical mass of people interested, informed, willing and supported to get involved and meaningfully impact research success. But we can't do that without you, nor would we want to.

As such, we've recently launched a referral program to speed up development of the community, and financially benefit those that help make it happen.

By becoming a referral partner, not only are you helping your community learn, network and access ways to get involved in research, you:

earn credits toward services and/or financial returns (conditions apply) that can further support/build your own capacity for research;
save time by leveraging our effort to make your community ready for the research opportunities you (and others) present;
benefit from having access to a larger community to recruit help from;
create the chance to build lasting relationships with those you refer by building your own group within our online community re-launching shortly.

*SPECIAL LIMITED OFFER*, announced here first.
Kick off the financial year on the right foot. Be one of the first 3 organisations to join our Referral Network before September to get the modest set-up fee waived. Contact Janelle for more information.

Here are the 26 clinical research studies/trials in Australia & New Zealand that have indicatied they started recruiting in June 2019 as found on the ANZCTR 11Jul19:

Aerobic exercise to improve cerebrovascular function, mood and cognition in middle-aged and older physically inactive overweight/obese adults. This study in Toowomba is looking for 135 men and women aged 50-80.
Novel Application of Cooled Radiofrequency Ablation for Pain Management after Total Knee Arthroplasty. This study is recruiting 10men and women aged 50-80 undergoing elective primary unilateral TKR surgery performed by A/Prof Leo Pinczewski at the Mater in Sydney.
Point-of-Care C-Reactive Protein Test for Supporting the Management of Respiratory Tract Infections in Western Australian Community Pharmacy: A Feasibility Study. This WA study is looking for 135 men and women aged 18-64 presenting to the pharmacy with either an RTI-related product request OR RTI symptom, and seeking advice regarding the need for antibiotics or need to visit a GP
Reducing Morbidity and Mortality by Initiation of a novel In-Hospital Treatment for Patients with T2DM (REMIT-2-D). This SA study is looking for 198 men and women aged 18+ with Type 2 Diabetes Mellitus with an underlying cardiac condition admitted to hospital.
A case-control evaluation of the effects of the 'Building Resilience – Sustaining Practice' resilience workshop on burnout levels in South Australian General Practice registrars. This SA study is recruiting 60 senior general practice registrars training with GPEx Ltd.
Defining the Australian Inflammatory Bowel Disease Microbiome Study - The AIM Study. This study in NSW and ACT is looking for 1000 people aged 6-80 with confirmed CD or UC (Copenhagen criteria (adults) and Paediatric Crohn's disease Activity Index (PCDAI) and Paediatric Ulcerative colitis Activity Index (PUCAI) (physician global assessment) or newly-diagnosed, OR for control groups, related close family members with no history of gastrointestinal inflammation or IBD.
The effect of weight stigma and the polycystic ovary syndrome (PCOS) disease label and causal explanations on intention to eat healthier and perceived personal control over weight: A randomised online study in reproductive aged women. This study in ACT,NSW,NT,QLD,SA,TAS,WA,VIC is looking for 280 women aged 18-45.
Follow-on study of a multicentre randomised, controlled trial (PPOIT-003) evaluating the long-term safety and efficacy of Probiotic and Peanut Oral Immunotherapy (PPOIT) compared with Oral Immunotherapy (OIT) alone and with placebo in peanut allergic individuals. This study in SA,WA,VIC is recruiting people that had completed the PPOIT-003 T2 visit according to PPOIT-003 protocol.
The effect of a physical activity program for first responders and their chosen support partners on psychological distress. This research study in ACT,NSW,NT,QLD,SA,TAS,WA,VIC is looking to recruit a convenience sample of former or current first responders, aged 18-65 years doing <150min exercise per week.
Proof of concept trial alternating lorlatinib with crizotinib in patients with anaplastic lymphoma kinase (ALK)-rearranged non-small cell lung cancer. This study in Sydney and Melbourne is looking for 25 people aged 18+
Effects of exercise mode on human skeletal muscle and circulating biological networks. This Melbourne study is looking for 10 sendentary males aged 8 - 30 with BMI 18.5 - 24.9 kg/m2.
A Randomized, Double-Masked (Sponsor-Open), Placebo-Controlled, Phase 1 Study to Evaluate the Safety, Tolerability, Pharmacokinetics and Pharmacodynamics of Escalating Single Doses and Multiple Ascending Doses of STG-001 in Healthy Subjects. This Melbourne study is looking for 67 healthy people aged 18-55.
A Clinical Trial to Test a Modified Traditional Chinese Herbal Medicine for the Treatment of Endometriosis. This study in ACT,NSW,NT,QLD,SA,TAS,WA,VIC is looking for 90 women aged 18-45 with endometriosis.
A study to see whether PET scans using a chemical called Exendin can detect metastatic prostate cancer. This Melbourne study is looking for 10men aged 18+ with metastatic castrate resistant prostate cancer (mCRPC) and a history of radical prostatectomy
South Asian Mothers and Children Being Active (SAMBA): A pilot randomised controlled trial of an educational intervention developed through community participatory research, aiming to improve physical activity participation among South Asian mothers and their children. This WA study is looking for 120 South Asian mothers of primary school-aged children (5 to 12 years old), who are able to communicate well in English, and their English speaking primary school-aged children (5 to 12 years old).
StandingTall-Plus: A 1-year randomised controlled trial of a novel multifactorial intervention for preventing falls in older people. This NSW study is looking for 518 healthy volunteers aged 65+ at high-risk of falls based on the following criteria: experienced 1+ falls in the past 6 months AND/OR have a self-reported fear of falling AND/OR are 80+ years.
Training Attention in Children with Acquired Brain Injury. This Melbourne study is looking for 80 children aged 4-9 with an Acquired Brain Injury (ABI)
A prospective Phase II study of Isatuximab Rescue for Inadequate response to Lenalidomide and Dexamethasone in transplant ineligible patients with newly diagnosed multiple myeloma (MM). This Melboure study is looking for 135 people aged 18+ with a diagnosis of MM as per IMWG.
Blackmores Memory (ARCLI II): Investigating the safety and efficacy of a Blackmores micronutrient formula on cognitive function in healthy adults aged 50-75 years. This Vic study is looking for 120 people aged 50-75 in general good health.
The C*STEROID Feasibility Study: Corticosteroids before planned caesarean section from 35+0 to 39+6 weeks This NZ study is looking for 400 women for whom caesarean section is planned pre-labour at 35+0 to 39+6 weeks gestation and are >24 hours and <7 days before planned birth.
L-carnitine supplementation for Neurofibromatosis type 1 muscle weakness and fatigue. This Sydney study is looking for 6 Children aged between 8-12 years old with a confirmed clinical diagnosis of NF1
Low-Fat Versus Ketogenic Diet In Alzheimer’s Disease: A Pilot Randomized Controlled Trial. This study aims to recruit 60 to 80 volunteers from the Waikato and Bay of Plenty regions aged 50-90 with mild dementia.
Factors affecting insulin dose requirements for treatment of prednisolone induced hyperglycaemia. This SA study is looking for 50 people aged 18+ prescribed a morning dose of oral prednisolone greater than or equal to 20 mg/day for an acute inflammatory illness, and Hyperglycaemia in the prior 24 hours.
Evaluation of an innovative mobile health program for the self-management of chronic obstructive pulmonary disease (MH-COPD). This QLD study is looking for 50 people aged 18+ with COPD
A Multicentre, Open-Label, Phase 2 Safety Extension Study to Evaluate the Safety and Tolerability of R-107 in subjects with Refractory Major Depressive Disorder. This study in NSW,QLD,SA,VIC is looking for 150 people aged 18-81 enrolled into the double-blind treatment phase of the R107-C205 (BEDROC) study.
A Phase 2 clinical study evaluating the efficacy and safety of R-107 for the Treatment of treatment-resistant depression. This study in NSW,QLD,SA,WA,VIC,NZ & Singapore is looking for 150 people aged 18-80 diagnosed with MDD

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.