Research4Me Newsletter October18

With the release of our Think Tank report in August advocating for ways to increase the accessibility of information for Australians looking for clinical trials, our time has been freed up to concentrate on collecting and sharing more stories of patient involvement in research, and preparing for moderating a panel discussion at the upcoming #TRX18 conference in Brisbane on the 26th October. (See below for more details and an exciting opportunity for our community members to go along).

We've also had the opportunity to meet a few more research teams looking to involve more patients and carers in their research. As a result, we are currently working on a partnership model for 2019 to help increase knowledge, networking and capacity amongst interested research groups and patients, carers and related organisations.

Please get in touch if you are interested in discussing how we can partner together to increase community participation and involvement in research, and develop both the consumer and researcher workforces to work together.

If you haven't already, why not join our Facebook Group. This is a safe place of like-minded people for asking questions, and sharing thoughts, events & information about medical and clinical research. And if you are a researcher looking for research participants or people to get involved in your research, remember you can share your medical research and consumer involvement opportunities each Tuesday night via this group. It's free, just make sure your HREC has approved it.

Please feel free to contact me anytime if you have suggestions for the type of help or content you are interested in seeing from us.

Till next time... Janelle.

2 Free Tickets to #TRX18. But be quick.

We are always advocating for the public to be more involved in research. So when we were invited to moderate a session at the Translational Excellence conference in Brisbane (#TRX18) talking about the development of therapeutics and the growing influence of patients in this area, we were keen to make sure there were patients not only on the panel, but in the audience.

So, putting our money where our mouth is, we are offering to pay the registration fee for 2 patients/carers that are members of our community with an interest in getting more involved in research, to attend the day. This is a bit of a last minute idea, so you don't have long to apply with applications due by the 18Oct18.

If you are free 26 October, and able to make your own way to attend the conference in Brisbane, please apply. And if you are a researcher working on a project, or in a research organisation/network with Brisbane-based consumers involved in what you do, please let them know about the opportunity. If people aren't already part of our Facebook group and volunteer database, then they are welcome to join to be eligible for this opportunity. We'd love to see and meet some friendly faces from our community at TRX18.

Find the full conditions and links to apply on our website. Remember, applications close 18Oct18, so don't delay!

Dr Mary Dahm shares her experience running a workshop to get consumer input in her research analysis

We love learning from researchers involving consumers in their research, and most importantly, hearing how they do it. We believe sharing these stories is one way to help research teams build the confidence and ideas for how they might go about it, since we also believe there is no one-sized fits all approach that will work for every type of research or every therapeutic area.

Dr Mary Dahm, a researcher at the Australian Institute of Health Innovation, Macquarie University, recently spent an hour talking with us about a workshop she held in July to get consumer input into the analysis of some qualitative research they had conducted relating to management of hospital test results. She generously allowed us to share her insights and experiences which you can read in detail on our blog. We'll be following up shortly with similar posts from two of the consumers that attended Mary's workshop to learn more about their experience and why they got involved. So keep an eye out for those on our blog in the coming weeks.

If you are a consumer involved in research, or a researcher working with consumers, willing to share your experiences such that others may learn from them, please let us know. We'd love to profile your stories on our blog too.

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

Developing treatments and helping future generations through breast cancer trials. October is Breast Cancer Awareness Month. Fran Boyle, Professor of Medical Oncology at the University of Sydney, and member of the scientific advisory committee of international Breast Cancer Trials collaboration based in ANZ talks about the value of breast cancer clinical trials.
Patient Fears of Placebo Use in Clinical Trials. While this article is aimed at advising clinicians talking to patients about placebos in clinical trials, it is just as useful to patients looking to better understand why placebo's are used, and why you shouldn't necessarily fear them.

Patients’ reasoning regarding the decision to participate in clinical cancer trials: an interview study. This journal article discusses the finding from interviews with 27 cancer patients about their decision to be in a clinical trial and how they made that decision.
Rare Disease Trials Require Patient Insights And Input. In advance of a conference being held next week in Washington, one of the speakers talks about why input from patients and carers into rare disease trials is so important.
Connecting clinical trials to the health care ecosystem, and patients to better care. Though a US-based article, the issues raised regarding low participation rates in clinical trials, and the value to the health system and patients of integrating clinical trials as a care option are just as relevant in Australia.
Addressing Financial Barriers to Patient Participation in Clinical Trials: ASCO Policy Statement. This statement from the American Society of Clinical Oncology provides some recommendations for reducing the financial impact to patients participating in cancer clinical trials, that are applicable in our view, to all trials.
Pivotal Clinical Trial Costs. Ever wondered how expensive clinical trials were? This infographic outlines an analysis of the cost of pivotal trials for novel drugs approved by the US FDA in 2015-2016 (ie the trials really important for gaining regulatory approval of a product).
Report: Deception in clinical trials ‘squanders precious research resources’. We all want to know the data which may inform future patient's treatment decisions is solid. It is critical researchers act with integrity, but also that trial participants do the same. This article talks about deception by people desperate to get into trials or non-adherent to a trials procedures, and potential ways to minimise it.
FDA proposes stiff fines for failing to report clinical trials. Research4Me fully supports mandatory trial registration and reporting and so was interested to see the US FDA is proposing heavy fines for companies failing to register their trials or report clinical trial results online, up to $10,000 per day.
Patient-Focused Drug Development Guidance: Methods to Identify What is Important to Patients and Select, Develop or Modify Fit-for-Purpose Clinical Outcome Assessments. As part of its continuing effort to develop guidance around patient-focussed drug development, the US FDA is holding a 2-day public meeting next week to get input into this topic. The list of resources for the workshop may be of interest in our community. The FDA are also accepting submissions online until mid December, if you have thoughts to contribute to this topic.

This is a list of Australian trials on the ANZCTR listed at currently recruiting, with a start date of 11Sep-11Oct2018.

The Urological Society of Australia and New Zealand (USANZ) Clinical Quality Registry. This pilot project will assess the feasibility of data collection into an ANZ renal registry. It will collect data of people aged 18+ undergoing nephrectomy and nephroureterectomy surgery.
Evaluation of the Cardihab Smartphone Application for the Delivery of Cardiac Rehabilitation. It is looking for 15 people 18 years or older eligible to enrol in Metro South Chronic Disease Rehabilitation Service - Cardiac Rehabilitation Program in Brisbane.
An open label, pilot and expansion pharmacodynamic Study of (Z)-endoxifen in Patients with Invasive Breast Cancer Prior to Undergoing Mastectomy or Lumpectomy. This interventional trial in Melbourne is looking for 8 females aged 18 or older scheduled to undergo mastectomy or lumpectomy for invasive breast cancer.
SAFE-PD - Stepping to Avoid Fall Events in Parkinson’s disease. This interventional, prevention study in Randwick, NSW, is looking for 44 people aged 40+ diagnosed with Parkinson’s disease.
Genomic sequencing for Refractory EPilepsy (GREP). This diagnostic study at centres in Melbourne and Sydney is looking for 180 children and adults (from 1 month old to 65 years old) who suffer from drug-resistant epilepsy and are likely to have a genetic cause of their illness.
Study to assess the safety and effectiveness of propagermanium as add-on therapy in Diabetic Kidney Disease (DKD) patients who are already taking Irbesartan. This interventional, phase 2 treatment study being run in NSW, VIC and QLD is looking for 40 people aged 18-80 with Diabetic Kidney Disease.
Study to assess the safety and effectiveness of propagermanium as add-on therapy in FSGS patients who are already taking Irbesartan. This interventional, phase 2 treatment study running in NSW, VIC and QLD is looking for 10 people aged 18-80 years with Primary Focal Segmental Glomerulosclerosis (FSGS) receiving Irbesartan.
The use of video media in informed consent in patients undergoing emergency appendicectomy. This study running in Gosford, Wyong and Newcastle (NSW) is looking for 100 people aged 16+ undergoing emergency appendicectomy.
BAN-Dep: A Trial to Decrease the Prevalence of Depression in Australian Nursing Homes. This trial in Melbourne and Perth will be looking to recruit staff at 100 Residential Aged Care Facilities, then Aged Care residents.
A Pilot Randomised Controlled Pilot Study to Assess the Efficacy of Photodynamic Therapy vs. Radiotherapy for Superficial Skin Cancer. This interventional study running at Darlinghurst in Sydney is looking for 100 people aged 18+ with a biopsy-proven diagnosis of superficial basal cell carcinoma or Bowen’s disease, for which they have received no previous treatment.

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.

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