CCReW Research News 30Aug24

Canberra CCReW Meetup over lunch, 10 Sep, 1-2.30pm. Venue to be announced shortly. As with all CCReW meetups, it is at your own expense. If you're a consumer involved in research and would like to come along and network with other like-minded people, please register for a seat at the table (to help with reservations) as soon as possible online.

PxP Conference - an online conference for patients involved in research, by patients, Sep 10-13 (pending timezone). Day's 1-2 are better suited to the northern hemisphere timezones, but Day 3 is suited to the Asia-Pacific timezone. We heard this week there's currently 75 Australian's registered, out of over 800+ registered, but I know there would be more interested. I'll be in the firing line with Anne McKenzie AM in the last session 'You Can't Ask That', closing the conference from 2.15-3.15 AEST on Day 3, moderated by Shyamsundar Muthuramalingam. If you're interested, you can check it our and register online. It's free, and has something for everyone, for both patients and carer advocates as well as the research professionals partnering with them.

Health Consumer online Q&A about the National One Stop Shop for Clinical Trials and Health-Related Research, online, Fri 20 Sep, 12-1pm AEST. Do you know what this initiative is all about? Do you have questions about how it might help consumers? We're delighted Dr Aliprandi-Costa, Dept Health & Aged Care accepted our invitation to meet with the health consumer community to answer as many questions as we can in an hour. Register online.

You might also like to save the following dates and we'll pop the links for registration in the next newsletter (or earlier in our Facebook Group):

CCReW Lunch Meetup in Sydney 16 October
CCReW Dinner Meetup in Melbourne 3 December.

The following is a list of trials from ANZCTR listed as having started recruitment between 22Jul24-29Aug (as at 29Aug). For more details, click on the links to access the specific trial information.

Cancer

A Phase 2 Study to Evaluate the Efficacy and Safety of Golcadomide in Combination With Rituximab in Participants With Newly Diagnosed Advanced Stage Follicular Lymphoma. NSW, QLD, VIC, SA, WA.
Multi-Omics Evaluation of Peritoneal Fluid in Gastroesophageal Cancer. SA, VIC. Uptake, Safety and Tolerability of 68Ga-NTA-476 Imaging of Prostate Cancer Tumours. Murdoch, WA.

Kidney Disease

Non-Invasive Magnetic Resonance Imaging Biomarkers to Evaluate Histology Proven Kidney Fibrosis in Chronic Kidney Disease. St Leonards, NSW.

Mental Health

Development of BipolarWISE – a program about living well with bipolar disorder. ACT, NSW, NT, QLD, SA, TAS, WA, VIC

Eye-Related

A trial to assess the visual performance of novel myopia management spectacle films in short-sighted young adults. Botany, NSW.

Infant/Paediatric/Adolescent

Developing infant tolerance to nuts via breastmilk: a randomised controlled trial. (For pregnant women planning to breastfeed with risk factors for infants to develop nut allergies). Perth, WA.
The effect of the Growing Minds Check-in for parents (GMCI-P) on parents/caregivers seeking help for child mental health. ACT, NSW, NT, QLD, SA, TAS, WA, VIC.

Intensive Care

Evaluate the feasibility of an allied health-led follow-up service to enhance recovery for intensive care survivors. Adelaide, SA.
Gastric Residual Volume Assessment by Stomach Ultrasound Compared to Aspiration in the Intensive Care Unit. Melbourne, VIC.

Healthy volunteers

A Phase 1 Study of AP02 (Nintedanib Solution for Inhalation) Delivered via the PARI eFlow® Nebulizer System to Evaluate the Safety, Tolerability, and Pharmacokinetics of AP02 in Healthy Volunteers. Melbourne, VIC.
A Phase 1 Study of MAXONA Pharmaceuticals MAX-001 in healthy subjects. VIC. Impact of information presentation and cognitive load on COVID-19 booster vaccine intentions, attitudes, and knowledge in Australian adults. Suitable for people aged 18 or above, able to read and write English. NSW.
Do artificially intelligent chatbots work to increase physical activity (in physically-inactive full-time office-based employees)? ACT, NSW, NT, QLD, SA, TAS, WA, VIC.

Other

Caring for Caregivers: A Postnatal Wellbeing Program. For Caregivers/parents of children enrolled into a CaFHS parenting group. Adelaide, SA.
A pilot randomised controlled implementation study to support women at high-risk of cardiometabolic pregnancy complications in enhancing screening and lifestyle. Melbourne, VIC.
Safety and technical evaluation of the Claria System for tissue extraction during laparoscopic hysterectomy. NSW, QLD.
Acceptance and Commitment Therapy for Endometriosis. ACT, NSW, NT, QLD, SA, TAS, WA, VIC.
The SOCRATES pilot study aims to assess the feasibility of randomising different Standard of Care (SoC) treatment options for a range of medical conditions (including various cancers, heart-related conditions and Deep Vein Thrombosis). Sydney, NSW.
High flow humidified nasal oxygen for prevention of hypoxaemia (lower than normal blood oxygen levels) associated with remifentanil patient controlled analgesia (PCA) in labouring people – a safety and feasibility study. Parkville, VIC.

We have no connection/involvement with any of the above studies. Please click the study link and scroll to the contacts section for whom to reach out to for more inormation. If the trial is not running near you, ask the researchers if there are other options or travel support available. We'd love to know if you make enquiries and join one of these studies. And if you have difficulty reaching the research team, please let us know that too.

If you are a sponsor or researcher that wants to let people know about your newly opened study, please complete our request form or contact us (it's free to list a trial once).

Monash Health Partners are seeking health consumers living or working in south and sount-east Melbourne active in their community with an interest in research and improving health outcomes, and from different language and cultural backgrounds, for a consumer advisory panel on increasing consumer and community involvement in research and healthcare improevement. See more online. Applications close 30Aug.
The NSW Office for Health and Medical Research has developed the Clinical Trials Register of Staff (CiTRoS), to capture the current Australian clinical trials workforce. If you work in clinical trials in any capacity, you are asked to complete the CiTRoS survey and invite your colleagues to do the same by 30 Aug. For additional information, please contact clinicaltrialsNSW at clinicaltrialsnsw@health.nsw.gov.au
ACTA are seeking abstract submissions for their December 2-4 Clinical Trials and Registries Symposium. Submit by 9Sep. Early bird registration for the ACTA conference ends 13 Sep.
Apply for a consumer scholarship for the ACTA conference (covers registration and up to $500 travel costs) by emailing events@acta.au, describing your consumer involvement and why you are interested in attending the Symposium, by 13 Sep.
The Health Literacy Hub is excited to announce its official launch event in Sydney on October 2 & 3, 2024. We invite expressions of interest for abstracts from those passionate about health literacy by 13 Sep.
Register free for the PxP (For patients, by patients) Virtual conference to be held online 10-13 Sep (depending on your timezone).
PaCCSC & CST Seminar Series: Perspectives on consumer involvement in research. Online via Zoom, Thurs 19 Sep. Learn more and get tickets online. Else, contact: cst@uts.edu.au
Attend Health Consumer Council WA free 'Introduction to Consumer Representation Training' either inperson 18 Sep or online 25 Sep.
On 25 Sep, Sydney Health Partners will host its inaugural clinical trial symposium: Testing for Success – Celebrating Clinical Trials Excellence. All are welcome to register (places limited), though the primary audience is clinical trial and health service leaders.
Contribute feedback on one of a number of TGA consultations currently happening, for example (but not limited to): Future regulation of assistive technologies (Closes 13 Oct).
The National Medicines Symposium, 19 Nov, will bring together experts and practitioners to discuss innovative strategies for enhancing medication safety, reducing polypharmacy, and improving the quality of life for all Australians. Register online.

Do you have an event or opportunity for consumers related to research you'd like to share in our newsletter? Please complete our request form or contact us. Iit's generally free to list unless it involves alot of time on our part to sort out).

Here's a few other bits and pieces you might like to engage with:

Pick up some tips from the Partnering with Consumers guide and educational resources developed by consumers for consumers, recently released by the Australian Commission of Safety and Quality in Health Care.
Think about whether you could use some of the resources created by the Garvan Institute and MCRI to "broaden inclusion of underrepresented communities in genomic research"
Learn more about the ARDC's recently commenced 18 month project "Clinical Research Data Sharing Frameworks' which informed by consultation is developing practical principles and guidance to support trustworthy sharing of clinical resarch data in Australia. If you are interested in getting involved, contact CT:IQ - info@ctiq.com.au
The Australian Commission for Safety and Quality in Healthcare has released the revised Australian Framework for National Clinical Quality Registries (2024) to support and encourage the use of data to inform clinical practice and policy.
For anyone involved in last year’s consultation, the NHMRC have now released their Statement on Sex, Gender, Variations of Sex Characteristics and Sexual Orientation in Health and Medical Research.
Settle into a comfy space for some light(ish) reading:

Research ethics preparedness during outbreaks and public health emergencies: Focus on community engagement. Res Ethics, May 24
Patient and public involvement in pragmatic trials: online survey of corresponding authors of published trials. CMAJ Aug24
Integration of patient and public involvement in a doctoral research study using the research cycle. Res Involv Engage, Aug 24 (We highly recommended reading this for a step-by-step example of engaging patients from start-to-finish in a research project)
Bridging the divide: supporting and mentoring trainees to conceptualize, plan, and integrate engagement of people with lived experience in health research Res Involv Engage, Aug 24
Facilitating choice when engaging young people with disabilities: reflections from co-researcher training. Res Involv Engage, Aug 24
Bringing the voice of social housing tenants into shaping the health and care research agenda Res Involv Engage, Aug 24 (UK Based)
Ethical considerations in public engagement: developing tools for assessing the boundaries of research and involvement. Res Involv Engage, Aug 24
Development, implementation, and scalability of the Family Engagement in Research Course: a novel online course for family partners and researchers in neurodevelopmental disability and child health. Res Involv Engage, Aug24
If health organisations and staff engage in research, does healthcare improve? Strengthening the evidence base through systematic reviews BMS Health Res Pol Systems Aug24
Patient-centred oncology: transforming drug development. Drug Target Review, Aug24.
Decentralized Clinical Trials: Bust or Breakthrough? Appl Clin Trials, Aug 24.
Anticipated changes to Australia’s privacy laws: What can you expect? Lexology Aug24
Understanding the Impact of the New EU Artificial Intelligence Act on Clinical Research. Advarra, Aug24
Enablers and Barriers of Research Engagement Among Clinician Researchers: Nursing, Allied Health and Medical Professionals. DovePress Aug24
Engaging youth in research planning, design and execution: Practical recommendations for researchers. Health Exp Jun24