Research4Me Newsletter Oct 2019

Dear ,

This week I met with someone that had reached out to us for some help to learn more about how we might support each other's efforts. In the course of that conversation they shared that they had not engaged with us before, because they are not directly involved in clinical trials. I can totally understand that. Much of our content is clinical trials focussed because 1. that is where I have come from professionally and 2. there is a desperate need both from a patient perspective and for researchers to improve awareness about and speed up this type of research. The vision for Research4Me is however to be a platform for supporting consumer engagement and involvement in all types of health and medical research. So I want to reassure you, if you have questions or opportunities around research outside of clinical trials, please free to come to us or Research4Me's community for help.

With 2020 just around the corner, I am turning my thoughts to plans for next year. Research4Me's historical activities have very much been shaped by the issues raised with us by you along the way, and we hope that will continue. To that end, I am planning on some relatively informal events around the country over the next few months, starting in Melbourne on the 21 Nov. It will give us (and you) a chance to unwind and network with our 'Tribe', talk about what you are doing or wish was happening in this space, and discuss with you Research4Me activities and thoughts for 2020. If you'd like 5-10mins to share some of your own or oan organisation's activities or thoughts, frustrations, gaps, etc around supporting increased public awareness, participation in medical research and clinical trials at one of these events, let us know so we can look to include you in the program. Stay tuned for more details on the 21st Nov and other meetings, including some 'virtual' meeting dates, so our rural and remote community members, or others that just aren't able to make an event in person can be involved too.

Have a great month ahead.

Best regards, Janelle.

Here's just some of the recent research, clinical trials and patient engagement articles and resources we've come across you might find interesting:

Activating Patients to better health - Results from a survey led by the Consumers Health Forum on the level of activation of patients in their own health, and the impact this had on their health outcomes. (From our perspective, getting involved in research is a great way to increase your level of knowledge of and engagement in your own health, which can only help your outcomes).
Type1Screen - (Thanks Kelly for sending us this to share)
The Patient Perspective On Patient Centricity: Insights From A Veteran Of 5 Clinical Trials, Amy Butler
Involving People with Arthritis - Resources on patient involvement in arthritis research from UK-based Versus Arthritis
NIHR UK - The Role of the Clinical Research nurse - A range of stories from clinical research nurses including this one which talks about public and patient involvement in research.
Consumer engagement and Involvement Toolkit - A new online resource launched by the Australian Clinical Trials Alliance (ACTA) and CT:IQ, with funding from MTPConnect to support researchers and industry to engage and involve people across the clinical trials lifecycle.
Obtaining Patient Perspectives During Open Label Extension Trials
The R-SCAN Patient-Centered Care Toolkit - an example resource to help radiology practices engage patients in quality improvement projects to improve imaging care, reduce unnecessary imaging exams and lowering the cost of care for the health system.
Collaborating With Patients: 3 Key Considerations For Drug Sponsors from Mary Elmer, executive director, Patient, Caregiver, and Consumer Experience, Merck & Co., Inc
Summit Roundup - A summary of what was discussed the the EFP Patient Summit Europe by leading pharmaceutical industry and patient associations around patient engagement in therapeutic development.
SCOPE Participent Engagement Award - An award presented each year at the US SCOPE conference to inspire innovation and change in how the industry communicates with participants in the fields of recruitment and retention in clinical trials. Apply by 15Nov.

Do you know of tools and articles our comunity might like? Send them through (like Kelly) for the newsletter, or post them in our Facebook group at any time.

These are the studies that starting recruiting in Australia & New Zealand during September 2019 as found on the ANZCTR 21 October 2019. Click on the links below if you are interested in further information and the contact people for any of these studies:

A randomised controlled trial in healthy adults evaluating the impact of high and low carotenoid dietary patterns on diet quality, weight status and metabolic markers and validate the Australian Eating Survey.
Determining the effectiveness of short videos for patients on uptake of referrals to pulmonary rehabilitation: A multi-centre randomised controlled trial.
Effect of prior consumption of gymnema sylvestre on desire for sugar-sweetened products in adults.
The effect of Palmitoylethanolamide (PEA) supplementation on the symptoms of allergic rhinitis - A double-blind placebo controlled trial.
A cluster randomised trial to evaluate the efficacy of booster messages in maintaining improvements in the nutritional quality of lunchboxes.
Internet-based management of rotator cuff disease: a pilot and feasibility randomised controlled trial .
How nutrition supplements may improve exercise capacity in people with Chronic Obstructive Pulmonary Disease attending outpatient pulmonary rehabilitation program.
Prevention of Diabetes Progression in Primary Care through Shared Medical Appointments.
The healthcare robot study: The effect of robot behaviour on human-robot interactions
Caring for Children After a Concussion using a Technology-Assisted Clinical Care Pathway.
Can high intensity exercise reduce period pain? A pilot feasibility study.
Attitudes towards sun protection and new technology in skin cancer prevention in healthy adults.
Improving wellbeing after acquired brain injury with a group program to enhance participation in valued activities.
Anti-malarial activity of increasing doses of ZY-19489 in healthy volunteers.
A Study to Evaluate Safety, Tolerability, and Antiviral Activity of BRII-179 (VBI-2601) among
Subjects with Chronic Hepatitis B.
What is the effect of a group-based yoga exercise program compared to a yoga relaxation program on falls among community-dwelling people aged 60 years and over?
Serotonin Noradrenaline Reuptake Inhibitors (SNRI) medications for the treatment of osteoarthritis pain (STOP) trial.
Preventing Cardiovascular Disease in people with Type 2 Diabetes: When is the Right Time to Move?
Boostability of One priming dose intramuscular Rabies vaccine especially in Senior age groups.
Travellers Rabies Intra Dermal Later testing & boosting of blood antibodies.
The Antenatal Colostrum Expressing (ACE) Study: Effects on breastfeeding and effectiveness of video instruction vs face to face instruction.
The impact of early vocational intervention on return to work outcomes for people who have experienced traumatic brain injury, spinal and musculoskeletal trauma.
Medicinal cannabis and dementia: Effects on behavioural symptoms among older residential care recipients.
Pilot Study: Effect of electrical brain stimulation on mental skills of individuals with long-term cannabis use.
An observational study of critically ill patients with severe acute respiratory distress syndrome.
Meeting unmet needs following minor stroke.
A prospective single centre randomised controlled trial of increased pump flow and arterial pressure during cardiopulmonary bypass to prevent post-operative acute kidney injury.
ENACT (ENvironmental enrichment for infants; parenting with Acceptance and Commitment Therapy): an innovative intervention for infants at risk of Autism Spectrum Disorder.
A Physical Activity Program in School-Aged Children with Attention Deficit Hyperactivity Disorder.
ALL09 - SUbstitute BLinatumomab to Improve Minimal Residual Disease Eradication in Adolescents and Young Adults with Acute Lymphoblastic Leukaemia.
A Prospective, Multi-Center, Single-Arm Study Assessing the Clinical Use of the CATERPILLAR™ Arterial Embolization Device System for Arterial Embolization in the Peripheral Vasculature (CHRYSALIS).
The study is designed to demonstrate safety and efficacy of the Extravascular Implantable Cardioverter Defibrillator (EV ICD) System.
A Study of Nivolumab in Combination With Ipilimumab in Participants With Advanced Hepatocellular Carcinoma.

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. If you would like to proactively advertise a study, check out below how we can help.