CCReW News 21Jun23

I was looking forward to being in Adelaide this week for Belberry's International Scientific Congress Public Meeting (registrations now closed) on Friday 23 June, then HTAi workshops over the weekend, but have cancelled while I recover. But a table has been booked for Friday night at the Adelaide Wine Centre at 5pm for a CCReW meetup (thanks Lyn Whiteway for taking the initiative!). If you would like to do some casual networking with other consumers interested/involved in research, then email me ASAP today, as Lyn needs to confirm the table numbers Wednesday.

Hopefully, I will be well enought to travel to Melbourne for a CCReW meetup on the 18 July, so stay tuned for more details, and do let me know if you are interested in coming. All consumers or consumer engagement folk welcome.

The government is currently consulting on how best to handle research funding managed through the National Health and Medical Research Council Medical Research Endowment Account (NHMRC MREA) and Medical Research Future Fund (MRFF), I am considering making a submission which takes into account consumer perspectives on the proposals and so will be holding an online consumer discussion for anyone that might like to contribute their thoughts to a submission on Mon 30 Jul at 12pm AEST. If you are interested in being involved, please RSVP here.

I'm keeping it bried today iso safe travels to everyone going to Adelaide this week.Check out the studies, opportunities, activities and resources below. And until we meet again, here's wishing life is kind to you.

This is a list of all studies on the ANZCTR approved by a human research ethics committee, recruiting in Australia, with a trial start date between 6-21Jun23, as at 21Jun23.

NeoNav ECHO Study: Determine what electrocardiogram (ECG) waveforms are associated with central venous access lines placed in babies and checked by ultrasound. This natural history study running in Melbourne is looking for 25 neonatal inpatients (0-1yrs) at the Royal Women's Hospital Neonatal Intensive Care Unit requiring central venous catheters.
Examining the effectiveness of a digital psychological intervention in people with Multiple Sclerosis attending the Multiple Sclerosis Clinic at Royal North Shore Hospital. This non-randomised, open-label, treatment study is looking for 120 people aged 18 years or older with MS, attending the Royal North Shore Hospital MS Clinic, and experiencing difficulties with their emotional and/or cognitive health.
A Study of Two Dose Levels of Vobramitamab Duocarmazine in Participants With Metastatic Castration Resistant Prostate Cancer. This international, phase 2, randomised, open-label study running in Melbourne is looking for 100 males globally aged 18 years or older with metastatic castration resistant Prostate Cancer.

For noting, if you are interested in a study, and it is not running near you, please contact the researchers in case there are other options or support with travel to participate.

Please contact researchers directly through the listings as we have no connection/involvement with these studies. We'd love to know if sharing these research studies is useful, so please drop us a line to let us know if you contact researchers about them.

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 (first listing free, subsequent listings for a fee).

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

Health Technology Assessment Policy and Methods Review – Consultation 1. This is the first consultation of a series related to the review of health technology assessment policy and methods in Australia. For more information, visit the Office of Health Technology Assessment's Consultation Hub. Submissions for consultation 1 close TODAY, 6 June. The HTA Review Reference Committee have also opened up expressions of interest for deep dive discussions with them, so read more here and apply by 1 Sep if this is of interest.
We all know participation information sheets and consent forms for clinical trials need improvement. Provide your feedback on the beta-testing versions of a new potential Australian template, developed through a CT:IQ project, available at www.informedpicf.com.au. Consultation is open until the end of the year.
To optimise the government’s investment in health and medical research, the Department of Health and Aged Care and National Health and Medical Research Council (NHMRC) are undertaking national consultation to improve alignment and coordination between the Medical Research Future Fund (MRFF) and Medical Research Endowment Account (MREA). Submissions close 14Jul. We will be considering making a submission and will be holding a consumer discussion 3 July if you would like to contribute. Please RSVP here for more information.
The University of Melbourne are advertising for a part-time Consumer Engagement Manager (Digital Health).
Sydney Health Partners Annual Forum 2023 - Aligning Research, Adding Impact will be held 19 July. Register online.
The Patient Voice Initiative are hosting a webinar about their recent research on how patient communities want to interact with pharma on 24 Aug, 12.30pm AEST (which I will also be participating in). Register free online.

Here's some other news and resources you might be interested in:

Patient Advocacy Groups and Drug Developers Unite Under New US Consortium (PALADIN)
Roles, outcomes, and enablers within research partnerships: A rapid review of the literature on patient and public involvement and engagement in health research. Research Involvement and Engagement volume 9, Article number: 43 (2023)
Reflections on patient engagement by patient partners: how it can go wrong. Research Involvement and Engagement volume 9, Article number: 41 (2023)
AccessCR's clinical trials jargon buster and Knowledge page for information and support around clinical trials basics, asking your doctor about trials, helping clinicians with information on trials and more. Check out our latest webpage sharing resources for involving consumers in research.

We're passionate about ensuring every Australian is aware of the opportunities available to them to make a difference through their participation in and contributions to research. So please share and recommend this newsletter and if Facebook is your thing, get involved in our Facebook group for real-time discussion. And if you have any feedback that can help us improve the usefulness of this newsletter, please get in touch. Together I hope we can help speed up and improve medical and clinical research.