Research4Me Newsletter Nov18

Today represents a year since we launched the online Research4Me community, and what I consider the official launch of Research4Me. Though we 'closed' the online community a few months ago in favour of a Facebook Group, we are looking at re-launching that space early next year once its EU GDPR (privacy) compliance is sorted as a way to be able to concentrate discussion and interests within particular groups, projects and themes.

What we are doing now has evolved from our ideas of a year ago, and those ideas continue to twist and turn as we learn more about the people we aim to serve. It's quite the journey figuring out how to become sustainable, and best help more people, I am so thankful for the generosity of those we've met to share their stories, ideas and experience with us.

The past 6 months have presented lots of personal challenges with illness and deaths in my close family. So I need to say thankyou to everyone for their patience with 'apologies for the delay, life has gotten in the way' emails which I feel I've sent too often this year. I remain more committed as ever as to the need for a community like Research4Me, and I have some big, bold ideas for the year ahead I hope you will be a part of.

I would like you, our community of patients, carers and committed research professionals, to be a part of shaping those plans and as such, I'll be pulling together a committee in the next couple of weeks to help steer those plans. I will be tapping a few people on the shoulder, but I also welcome you to contact me if you are passionate and want to put your hand up to be a leading voice for change in this space. As always, watch our social media for opportunities to get involved.

I have oft been reminded lately how 'life' can get in the way of even the most noble of intentions. So, why would people with lots going on in their lives have time to get involved in research? Making it easier and less burdensome to involve people and get them involved has to be a number 1 priority. I look forward to continuing the conversation with both the public and researchers as to how we can do that together. No-one has resources to waste, and I believe there is a way we can work together to leverage each others efforts and learnings to achieve more.

Getting people involved in research starts with telling people what the opportunities are to do something, whether that be as participants, or as contributors, partners, collaborators, reviewers, etc (whatever your chosen word). That's why we remind researchers and industry of the free opportunity we provide EVERY Tuesday night from 5-10pm to share what you need patients and carers to help with or participate in in our Facebook Group,

We'll be at the ACTA conference 29-30Nov and hope to connect those of you who share our common interest in consumer engagement in research. Don't forget, if you are a patient/carer, you have until Friday 23 Nov to apply for our free ticket to attend. Please share this opportunity with those you think might like to go, as we really don't want a consumer to miss this opportunity to further develop their understanding of the clinical researh environment, learn how they can get involved, and mix with the researchers hoping to change lives for the better, even if only for a little while.

Till next time... Janelle.

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

As of today, our blog and news are now conveniently placed in the one spot on our website - Latest News. And in case you missed some of the stories of the last month, here's a quick recap...

We published interviews this month to share the experiences of those involved in a research workshop where consumers were brought in to help analyse the data. In a series of 3 posts, we spoke with Dr Mary Dahm, the researcher that held the workshop about how she did it and why, as well as two of the consumers that attended, Maureen and Ben, who spoke about their experience as health consumers and why they got involved in this research.

We shared the opportunity to go to the ACTA clinical trials conference in Sydney next week, In case you missed it above, find out here why you might want to go and how to apply for the free registration - due by Fri 23 Nov, midday.

And one of our community, Reina S. Weiner shared her thoughts on why clinical trials matter to her. Reina has participated in 4, so she is speaking with the voice of experience.

We've also been talking to others, so keep an eye out this coming Sunday and Monday for our next 2-part story speaking with a research team member and consumer contributing to the ENDIA study, Australia's largest study into the cause of type 1 diabetes.

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

Should you enroll in a drug trial? This article covers off some high-level information about the process of going into a clinical tria. WE always advocate that people should ask about clinical trials, but then decide on a case by case basis, whether those trials are right for them. In our view, it's better to be able to make informed decisions about your choices for care, than to miss out on potential options.
The intention to develop Australia’s first National Rare Diseases Framework and Action Plan has been announced by the Department of Health. This should be encouraging news to many of our community that have an interest in rare diseases.

Kindness matters – Debra Letica, Consumer/Carer Representative. In this wonderful piece, Debra talks to how she become a consumer representative and the kindness that is necessary to build confidence and trust in relationships. It doesn't speak specifically to being a consumer rep in research, but they are wise words for anyone looking to be a health consumer representative or engage with health consumers.
A Patient's Journey To Join A CAR-T Cell Therapy Trial. Nicole Gularte, co-founder of The Inspired Heroes, a group of cancer survivors who are advocates, speakers, and consultants, talks about her path to a CAR-T Cell Therapy Trial, and why she now advocates every single child who is diagnosed with cancer should have access to CAR-T therapy as a first line treatment.
Research waste is still a scandal—an essay by Paul Glasziou and Iain Chalmers. The authors have been long-time advocates for calling out and reducing waste in medical research. This article provides a summary of what's been done, with more yet to do. At Research4Me, we believe getting patients involved in research can help reduce research waste by ensuring "...better research, and research done for the right reasons."
How Facebook and Twitter could be the next disruptive force in clinical trials. Participants in medical research are more empowered than ever to influence the design and outcomes of experiments. Now, researchers are trying to keep up.
How a simple ‘thank you’ could improve clinical trials. This really is a no-brainer, and the minimum level of respect and courtesy researchers should show to those that participate in their research. The fact that it required an article in Nature speaks to the need however to draw attending to this basic courtesy. Now that the 'evidence' exists, its up to researchers not doing it to get 'implementing'.
A Questionnaire Survey on Awareness of Clinical Trials Among Medical Students. This was a small US study, but demonstrated how little understanding those in medical college have of clinical trials. Given clinicians are the gatekeepers of the information given to patients, we believe it is critical they have an understanding of clinical trials and can support their patients in finding and evaluating the ones that are right for them.
Recommendations for the design of small population clinical trials. A question came up in our community about how trials are done in rare disease and the role of registries. So we thought this article might be interesting to both those in the rare community, but also researchers who will grapple with increasingly smaller population sizes as genomics starts to impact the definition of disease conditions and hence target populations for their research.
Advertising for clinical trial recruitment cannot take a one-size-fits-all approach. We are often asked for the silver bullet that can be applied to all patient engagement. We don't believe there is one, and researchers need to understand the group they want to engage with. Unsurprisingly, when it comes to trial recruitment, the same principle applies.

This is a list of trials on the ANZCTR listed at currently recruiting in Australia, with a start date of 11Oct-22Nov18:

Clinical study Of caNNabidiol in children and adolesCenTs with Fragile X Open-Label Extension (CONNECT-FX OLE). This study is open to 300 participants already enrolled in a prior study and is running in NSW,QLD,and VIC.
Spinal Cord Stimulation in the treatment of chronic, intractable pain using the Nalu Neurostimulation System in adults. This study is looking for 40 people aged 21-80 with Chronic Intractable Neuropathic Pain of lower limbs with or without back pain and is running in NSW,QLD,WA,VIC and New Zealand.
The effect of early feeding into the gut on gut function after major colorectal surgery – a feasibility study. This prevention study is looking for 20 people aged 18+ with pelvic exenteration for cancer and curative measures amd is running at Royal Prince Alfred Hospital in Sydney.
Breathing Muscle Training in Parkinson's Disease. This study is looking for 60 people, both healthy people and those with mild to moderate Idiopathic Parkinson’s Disease aged 18+. It is running in Perth, WA.
A novel PET (positron emission tomography) tracer for donut-like PET findings in patients with neuroendocrine tumours. This diagnostic trial in Sydney involves just one imaging procedure and is looking for 10 people aged 18+ with metastatic neuroendocrine neoplasm (NEN) and histological confirmation who have undergone PET scans at Royal North Shore Hospital Sydney.
Trial to Evaluate the Safety and Anti-Psoriatic Efficacy of Topical Formulations of BTX 1308 ( active ingredient cannabidiol) in Subjects with Psoriasis Vulgaris. This study is looking for 15 people aged 18+ with psoriasis vulgaris. The study is running in Adelaide.
Safety, Tolerability, Pharmacokinetics (including Food Effect) of Single Ascending Doses of SAR441121 in healthy male subjects. This Phase 1 study is looking for 62 healthy men aged 18-49yrs and is running in Brisbane.
Testing the effectiveness of supported referral to healthy lifestyle interventions in reducing the number of modifiable risk factors among primary care patients. This 6month lifestyle/prevention study is looking for 588 people aged 18-75yrs and is running in Newcastle, NSW.
The Depot Evaluation Buprenorphine Utilization Trial (DEBUT). This 24week treatment trial is looking for 120 people aged 18+ with opoid dependence and is running at centres across NSW, SA and VIC.
Evaluation of a telehealth intervention for delivering psychological support to people with brain tumour and their families. This study, running in QLD, is looking for 148 people aged 18+ with a benign or malignant primary brain tumour and showing signs of psychological stress.
The effect of beer and non-alcoholic beer consumption on adult drinkers' liking of snack foods. This study running in Melbourne is looking for 30 healthy 18-65yr old men who like and eat savoury snacks.
Evaluating the effectiveness of a video-based online intervention in reducing depression and anxiety in adults. This study running in the ACT is looking for 750 people aged 18+ with a moderate level of psychological distress (depression, anxiety).
A Phase 1 study to evaluate a Subcutaneous Formulation of RYI-018 Compared to Intravenous Formulation in Overweight and Obese Healthy Volunteers. This study is looking for 20 healthy people aged 18-45 with a BMI of 25.0 to 40.0 kg/m2 and is running in Perth.
A Phase 1 Study of a Novel Formulation of PRN2246 Compared to a Reference Formulation in Healthy Adult Participants. This study in Perth is looking for 14 healthy people aged 18-55.
Changing driver behaviour during floods using an e-health imagery intervention. This prevention study involving surveys and an online video is looking for 460 people aged 17+ from across ACT, NSW, NT, QLD, SA, TAS, WA, and VIC.
A study investigating safety, dosing and effectiveness of medicinal cannabis for symptom relief for patients with advanced cancer. This study running in Brisbane is looking for 15 patients with advanced histologically proven cancer aged 25+.
WALK - A pilot randomised controlled trial evaluating community walking for knee osteoarthritis. This study in Hobart, TAS is looking for 48 people aged 45+ with knee osteoarthritis.
Use of the ROSA Knee Robot System for patients undergoing a primary total knee replacement. This study is looking for 30 people aged 18+ that qualify for a primary total knee arthroplasty and is running in Sydney, Melbourne and Bendigo.
A first in human study to evaluate the safety and immune response to a vaccine for the treatment of a respiratory virus, when administered into the arm in healthy adult participants. This Melbourne Phase 1 study is looking for 60 healthy people aged 18-45yrs.
Pregnant women eating eggs and peanuts to reduce baby food allergies (PrEggNut Study). This study is looking for 2136 women with a single pregnancy of less than 23 weeks who are planning to breastfeed for at least 4 months, and at least 2 family members (mother, afather or siblings) with an allergic disease. The study is running in multiple centres across NSW,SA,WA, and VIC.
Preventing functional decline in allogeneic bone marrow transplant: the BOOST study. This study in Melbourne is looking for 63 people aged 18+ undergoing allogeneic bone marrow transplant for haematological cancer at the Royal Melbourne Hospital.
The effect of computerised cognitive training on cognitive impairments in breast cancer patients receiving adjuvant chemotherapy. This study running in multiple centres across Perth, WA, is looking for 40 female patients aged 21-80 with stage I-III breast cancer who will receive adjuvant chemotherapy agents
Dexmedetomidine in delirium at the end of life. This study is looking for 22 people aged 18+ approaching the end of life with delirium, admitted to the Port Kembla Palliative Care Unit at Illawarra Shoalhaven Local Health District.
Preterm Birth Prevention Study - Treating vaginal infections to prevent prematurity. This prevention study in Perth is looking for 6174 pregnant women aged 16-60yrs.
The 'Dads And Daughters Exercising and Empowered' (DADEE) Community Rollout. This study running in Newcastle, NSW, is looking for 560 men aged up to 65yrs with a daughter currently attending primary school (K - 6).
BCT 1703 (DIAmOND): A phase II study of combination CTLA-4 and PD-L1 blockade in advanced HER2-positive breast cancers who have progressed on prior trastuzumab-based therapy. This study running at multiple centres across NSW, QLD, SA, TAS, WA, andVIC is looking for 50 people aged 18+ with Advanced HER2-positive breast cancer.
BCT 1702 ( CHARIOT: CHeckpoint therApy in tRiple negatIve breasT Cancer. ): This phase II treatment study running at multiple centre across ACT, NSW, QLD, WA, and VIC is looking for 33 people aged 18+ with non-metastatic, triple negative breast cancer.
Gastrointestinal eradication of multi-resistant gram negative bacteria by faecal microbiota transplantation (FMT). This study is looking for people aged 18-85 with refractory or recurrent infection–defined as at least 3 episodes of infection requiring at least 3 episodes of antibiotic therapy in preceding 24 months - caused by gram negative bacterium which has become antibiotic resistant.

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 investigators listed directly.