CCReW Research News 28Jun24

MTPConnect released their 2024 report on Australia clinical trials sector - advancing innovative healthcare and powering economic growth. As a member of the Expert Advisory Panel, I was pleased to see a highlighting of the need for greater patient-centricity, patient awareness and engagement in clinical trials as an opportunity for the sector.

CT:IQ finally launched their Informed Project template participant information and consent forms. I encourage everyone to take a look at and use the proposed templates, to improve the presentation, readability and patient-centricity of the information provided to potential trial participants. There's lots of guidance to help.

I enjoyed the Sydney CCReW meetup in Darling Harbour on the 13 June. It was beautiful to see new connections being made, and acquaintances deepened amongst the 18 attendees. I hope to hold another one soon. And while I am not currently in a position to travel much, if you'd like to hold a CCReW meetup near you, let me know and I'll do what I can to promote it so people around the country the opportunity to enjoy some networking like we did. The chatter just didn't stop! Thanks to everyone that came along. You have no idea how much I needed to see your smiles that week.

The following is a list of trials from ANZCTR listed as having started recruitment between 20May-28Jun24 (as at 28Jun). For noting, due to technical difficulties at ANZCTR, trials pulled from clinicaltrials.gov are not available this month. I will include those trials next newsletter, assuming ANZCTR has fixed the search issue. For more details, click on the links to access the specific trial information.

Cancer

Baduanjin mind-body exercise for cancer-related fatigue in cancer participants receiving adjuvant chemotherapy: a randomised control feasibility trial. NSW

Heart Conditions

A feasibility study for measuring physical activity in patients undergoing open heart surgery. VIC.

Healthy volunteers

A Phase 1 Drug-Drug Interaction Study in Healthy participants to Determine the Effects of Itraconazole on the Pharmacokinetics of JNT-517 (Victim) and the Effects of JNT-517 (Perpetrator) on the Pharmacokinetics of Midazolam and Pravastatin. VIC.
Feasibility of a Digital Coach for Self Esteem in Healthy Adults Not Currently Experiencing Mental Health Problems. NSW.
Phase 1 Study to Investigate SIR2501 in Healthy Adult Participants. VIC.
Effect of an electric fan on sleep quality in hot overnight environments in young healthy adults. NSW A First-in-Human Study of ZE50 0134 in Healthy Volunteers. NSW.
Acute and chronic effects of the Brain & Body Protein Powder on sleep in healthy older adults. SA

Other

Efficacy of Clinical Emotional Freedom Technique for Symptom Management in Vision Impairment and Psychological Issues: A randomised online trial. ACT, NSW, NT, QLD,SA,TAS,WA,VIC.
Dietary treatment for irritable bowel syndrome in adults: a pathway to disordered eating? A pilot study. ACT, NSW, NT, QLD, SA, TAS, WA, VIC.
The Bendigo Family Study - A tri-generational study of rural families and their access to healthcare. VIC.
A Phase IIb trial assessing a Chinese Medicine for Dizziness and Vertigo. ACT, NSW, NT, QLD, SA, TAS, WA, VIC.
A trial evaluating the impact of guidance-based requests on screening and diagnosis rates of CONn syndrome in primary care. (Note: study recruiting GP practices, not individuals) SA, TAS, VIC.
Investigating the effectiveness of mindfulness meditation and clinical hypnosis for addressing burnout and optimising wellbeing in competitive athletes. QLD.
Feasibility and acceptability of a culturally responsive group-based smoking cessation program for Aboriginal and Torres Strait Islander women. NSW.

We have no connection/involvement with these studies, so please open the links to get the contact details for the study. 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.

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).

The following are some upcoming opportunities and events spotted that may be of interest:

Health Consumers Queensland are inviting expressions of interest from consumers with experience of patient flow within the Queensland hospital system (either as a patient, a family member of a patient or carer of a patient) to join the Queensland Senate 2-day workshop on the 18-19July. For more information, visit the website. Apply by 30Jun24.
The Lung Cancer Clinical Quality Data Platform (LUCAP) project seeks to improve the care of people with lung cancer. The LUCAP research team are seeking to establish a Consumer Advisory Group (of up to 12 members) to advise and guide the project. If you have a lived experience of lung cancer or are a health professional working with person/s with lung cancer, consider joining the LUCAP Consumer Advisory Group. Reimbursement for time offered. For more information, please visit the website. Applications close Fri 5Jul24.
VCCC Webinar 8Jul, 1-2pm. A showcase of the activities undertaken by the VCCC Alliance Health Equity Program during the Strategic Program Plan, to improve access to cancer care and services for culturally and linguistically diverse communities with consumers, researchers and clinicians.
Apply as a Patient/Consumer User for either a complimentary ticket or a complimentary ticket with funding towards your travel and accommodation costs to attend the International Forum on Quality and Safety in Healthcare: Brisbane 6-8 Nov. Online applications close 10Jul24.
Researchers at Curtin University (WA) are looking for two people with lived experience of dysphagia (swallowing difficulties) to assist them with a project that will design a new tongue-computer interface and gamification of tongue-strengthening exercises. For more information, please visit the website. Reimbursement for time offered. Apply by 12Jul24.
VCCC Webinar 15Jul, 1-2pm. Leading experts in sarcoma, pathology and familial genetics will provide an overview of the role of genetics in sarcoma and the usefulness of genetic testing in sarcoma management.
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.
La Trobe University are seeking 500 people aged over 18 living in rural Australia to join their Rural Health Consumer Panel. For more information, please visit the website.
Child Unlimited/Luminesce Alliance are inviting people who have accessed (or support people accessing) the NSW Health System to join their Consumer Advisory Group. For more information and to apply, please visit the website.
Health Consumers NSW and the Univeristy of Wollongoing are inviting inviting people to participate in a research study investigating Health Consumers' perspectives, attitudes and beliefs about participating in data sharing or data linkage consumer groups (specifically related to General Practice Data). Learn more online.
The Eurobodalla Health and Community Expo is on the 23 Nov 24 in Batemans Bay. This is a great opportunity for health and research organisations to engage with the NSW South Coast community about their work (I know from experience!). If you want to secure your FREE exhibitors table at the Expo, please contact Brad Rossiter OAM via email: eurobodallaexpo@gmail.com

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

I recently came across this 2001 CHF guide for consumers who want to run a research project, that still has lots of useful info. Check it out.
Catch up on where Australia's clinical trial industry is at and the opportunities for growth in the MTPConnect report.
Settle into a comfy space for some light(ish) reading:

Patient and Public Perceptions in Canada About Decentralized and Hybrid Clinical Trials: “It’s About Time we Bring Trials to People”. Ther Innov Reg Sci Jun24
Beyond experiential knowledge: a classification of patient knowledge. Social Theory and Health Jun 24.
Patient Advocacy - From a Seat at the Table to Equal Stakeholders. Book chapter, May 24
Public involvement and engagement in scientific research and higher education: the only way is ethics? Res Involv Eng May24
Identifying the priorities for supervision by lived experience researchers: a Q sort study. Res Involv Eng Jun24
Public involvement in UK health and care research 1995–2020: reflections from a witness seminar. Res Involv Eng Jun24
Patient and public involvement and engagement in the development of innovative patient-centric early phase dose-finding trial designs. Res Involv Eng Jun24
https://link.springer.com/article/10.1186/s12913-024-11182-xPatient-driven research priorities for patient-centered measurement BMC Health Serv Res Jun24
A Scoping Review of Patient and Public Involvement (PPI) in Empirical Stroke Research Jun24