Research4Me Newsletter 11Sep18

August in Australia means National Science Week, and we did our bit to encourage the next generation of medical researchers. I spent a fun morning explaining what scientists do and clinical research to a group of preschoolers. By running a blinded trial 'to find out whether red, blue or yellow Smarties make you happier', we were able to talk about the concepts of designing a question to ask, preventing bias, blinding, consent, data collection and analysis, obviously in terms that made sense to 3-5year olds.

In running this most basic of 'trials', with even the most junior of participants, I was refreshingly reminded of why Research4Me advocates for greater patient involvement in research, and why trials sometimes get off track, with lessons for all clinical researchers. In a spirit of open sharing and learning from each other, I have posted about the experience on our blog. Let me know what you think, either on our social media channels, or the blog post itself, and whether you want to collaborate to do something similar in Science Week 2019.

In case you were wondering, red Smarties apparently made these kids happier than blue or yellow Smarties (which probably explains why us parents observe our kids will hit new levels of excitement whenever they eat/drink anything red!).

Mid last month, we finally released the report and recommendations from our April Think Tank about finding clinical trials in Australia. (See below). This report is helping shape what is next for Research4Me as advocates for advancing medical research and treatments by solving the problems of patients and carers. Please join us to share, advocate for and progress the recommendations so the hope patients have in clinical trials can be realised.

We would like to welcome those that have recently joined our volunteer register. We'd love you to encourage your family and friends to do the same to help speed up and improve research, and hope we can help find you opportunities to make a difference in the months and years ahead.

Remember, our Facebook Group is your resource for asking questions, and sharing thoughts, events & information about medical and clinical research. We also encourge researchers to share their medical research and consumer involvement opportunities each Tuesday night via this group.

Please reach out if you have ideas or need support re patient and carer participation and involvement in medical research, especially clinical trials.

Till next time... Janelle.

Think Tank Report - 5 Recommendations

If you've ever looked for a clinical trial and had trouble finding one, or are a clinical researcher looking for volunteers, we'd really encourage you to take a look at the Think Tank report we've just released. This comprehensive report aims help all stakeholders come to a common understanding of the processes and challenges finding and providing information on clinical trials in Australia, and ideate possible solutions.

Importantly, we'd like your help spreading the word, advocating for change, and if its within your capability, making it easier for patients to find trials.

Read more about and access the report via our News page.

This is a list of trials on the ANZCTR recruiting in Australia registered with a start date 20Aug -10Sep 2018.

iPads for people with dementia in residential care: A feasibility pilot randomized controlled trial. This trial is looking for 36 people aged 65+ with dementia that are permanent residents of one of three residential care facilities in Melbourne.
Inhaler technique mastery and maintenance in general medical practitioners: Easy Low Instruction Over Time (Dr ELIOT). This study is assessing what level of education is minimally required to master inhaler technique in general practitioners (GP), and is seeking 200 NSW GPs to participate.
MS-SAFE: Stepping to Avoid Fall Events in Multiple Sclerosis. This NSW study is seeking 44 people with MS aged 18-70 years.
An Open Label Study to Evaluate Safety and Duration in Stomach of Modified Release Prototype Capsules Containing Memantine Hydrochloride in Healthy Adults. This Phase 1 study in Adelaide is looking for 14 healthy males and females aged 18-40yrs.
The HOME Rehab Trial: comparing the effectiveness of occupational therapy homevisit discharge planning to in-hospital consultations to improve participation after stroke. This study is looking for 360 stroke patients being discharged home aged 18+, in NSW, QLD, SA, VIC.
Physical activity in the prevention and management of gestational diabetes. This study running at the University of Wollongong, NSW, is looking for 80 women aged 18+ between 12-30 weeks of pregnancy.
A co-designed physical activity intervention delivered online for first responders and their partners. This study will recruit 20 sedentary first responders aged 18-65yrs and their chosen support partner in ACT, NSW, NT, QLD, SA, TAS, WA, VIC.
An evaluation of two contact lenses to correct presbyopia. This NSW study is looking for 45 presbyopic people at least 40 years old, male or female.
A first in Human single-Center Study To Evaluate the effectiveness and And Safety Of A Live Attenuated Dengue Vaccine (KD-382) In Healthy Adults. This Phase 1 trial in Adelaide is looking for male or female volunteers aged 18-65 years.
A randomised control trial of cognitive training and non-invasive brain stimulation in Parkinson's: The impact on cognition (thinking skills) and quality of life. This Perth study is looking for 52 people aged 18+ diagnosed with idiopathic PD.
A safety and efficacy study of ATL1102 in patients with Duchenne Muscular Dystrophy. This Melbourne study is looking for 9 adolescent males aged 10 to 18 years with a diagnosis of non-ambulatory Duchenne Muscular Dystrophy for at least 3 months.
Better Knee, Better Me: effectiveness of two scalable health care interventions supporting self-management for knee osteoarthritis – a randomised controlled trial. This trial is looking for 415 people aged 45-80 with osteoarthritis in ACT, NSW, NT, QLD, SA, TAS, WA, & VIC.
The Postpartum Sleep Study for Mothers (The POSSUM Project). This Melbourne study is looking for 120 first-time mothers between four to twelve months postpartum aged 18+.
Benzodiazepines, alcohol and driving performance. This Melbourne study is looking for 90 males or females, aged 21-40 years in good health with experience with benzodiazepines.
INB03 for patients with metastatic cancer with increased inflammatory biomarkers in peripheral blood. This Phase 1 study in Adelaide and Wollongong is looking for 15 people aged 18+ with histopathological diagnosis of epithelial cancer and stage 3 or 4 cancer of the lung, breast, upper or lower gastrointestinal tract, kidney, or skin (melanoma only).
Validating a new system for measuring pressure beneath feet lacking sensation. This study in QLD is looking for 15 people with Diabetes mellitus Type 1 or Type 2, aged 18+ with Peripheral Neuropathy.
A randomised controlled trial to evaluate online memory specificity training for the treatment of depression. This study is looking for 125 people aged 18+ with a current diagnosis of a Major Depressive Episode in ACT, NSW, NT, QLD, SA, TAS, WA, & VIC.
A research study of digitally supported skin self-examination compared to usual care in people treated for localised melanoma. This NSW study is looking for 100 patients aged 18+ treated for stage 0/I/II melanoma.
Evaluation of the Effectiveness of a Mindfulness-Based Change in Cognitive State in Reducing effects of Chronic Uncontrolled Reversible DisEases (SMART CURE). This study is looking for 40 patients and outpatients at The Prince Charles Hospital in Brisbane with hypertension or COPD or both and on treatment.

Research4Me has no relationship with any of these trials. If you are interested in more information, please click the links and contact the investigators listed directly.

Here's 10 thought provoking articles we've recently come across:

Young Bride Chooses Molecular Profiling and Clinical Trial The journey of a young woman with a rare type of pancreatic cancer.
'Clinical trials prevented me from suffering another stroke'. An Australian patient talks about his journey onto a trial for a medicine to prevent a second stroke.
In the Effort to Diversify Clinical Trials, Trust, Access, and Education Play Crucial Roles. A US oncologist talks about what he sees is needed to include more diverse participants in clinical trials.
The Importance of Age Diversity in Clinical Trials This discussion is a call to action for researchers to consider making sure they study all the agegroups that might one day need the intervention they are researching.

Journal Article: Development of a standard form for assessing research grant applications from the perspective of patients
Patient Video Colleen McGavin, Patient Partner SPOR, talks about her experience as her dads carer and how that has led to her involvement in health research.
Better Together: Patient Partnership in Medical Journals. This editorial in the British Medical Journal talks about BMJ's own journey with, and encourages other journals to forge a path to, greater patient involvement, as a way of bridging the gap between the aspirations of research and reality for patients.
Journal Article: ‘Adding another spinning plate to an already busy life’. Benefits and risks in patient partner–researcher relationships: a qualitative study of patient partners’ experiences in a Canadian health research setting
Hu-manity.com launches new blockchain app US company Hu-manity.co has launched a global ledger where people can claim their healthcare data as a personal property right and then sell it to researchers.
ABC News: Secret history of the first Australian to be given penicillin