How to get involved with research

From the Centre of Research Excellence in Stroke Rehabilitation and Brain Recovery

At the October Stroke Research Consumer Forum some people wanted to be involved in research. We recognise the challenge of letting the stroke community know about research they might like to join and helping researchers find participants for their studies. There is no easy solution.

Our Centre of Research Excellence website has a link to stroke trials that are listed on the Australian New Zealand Clinical Trials Registry. But often these study summaries are out of date. So it is hard to know if they are open to participants or not.

While we grapple with an effective way to link the stroke community and researchers to do research we have described some currently recruiting projects that might be of interest.

Also included is a link to a Canadian website about stroke rehabilitation and recovery that is looking for feedback.

Wishing you a lovely Christmas and a happy and safe 2018.

Clinical trial registries

The World Health Organization (WHO) definition for a clinical trial is:

‘any research study that prospectively assigns human participants or groups of humans to one or more health-related interventions to evaluate the effects on health outcomes’.

The International Committee of Medical Journal Editors notes that the purpose of clinical trial registration is to:

• prevent selective publication and selective reporting of research outcomes
• prevent unnecessary duplication of research effort
• help patients and the public know what trials are planned or ongoing into which they might want to enroll, and
• help give ethics review boards considering approval of new studies a view of similar work and data relevant to the research they are considering.

Links to clinical trials registries can be found on the Stroke Recovery CRE website.

The Australian New Zealand Clinical Trials Registry is an online registry of clinical trials being undertaken in Australia, New Zealand and elsewhere.

ClinicalTrials.gov is a database of privately and publicly funded clinical studies conducted around the world.

More information about Clinical Trials can be found through the Australia Government's National Health & Medical Research Council.

Pain following stroke

Researchers at The Florey Institute of Neuroscience and Mental Health in Melbourne are currently conducting an online survey investigating pain following stroke. The survey is anonymous, and involves answering a questionnaire, followed by some body recognition tasks. Participation usually takes between 15 and 20 minutes. They are looking for as many participants with stroke, regardless of whether they have pain or not.

If you are able to participate, please visit research.noigroup.com/?_p=stls. This will take you directly to the information page of the study, where you can read more about it, and choose to participate if you wish.

They require over 600 participants, so if you can help they would really appreciate it. If you wish to contact the researchers directly, you can contact Brendon Haslam.

Boosting motor recovery after stroke

Location - Melbourne:

The Florey at Austin Campus (245 Burgundy Street, Heidelberg, Victoria 3084)

Project description:

Research in healthy adults has shown that a single exercise session can boost the brain’s capacity for motor learning. To transfer this theory to stroke rehabilitation we ask stroke survivors to perform a motor learning task. Subsequently, they will perform a single session of aerobic exercise on a recumbent stepper (5–15 minutes). Participants then repeat the motor learning task. Testing and training will take place at The Florey for 2 hours/week over 5 weeks. If successful, this broadly applicable intervention can lead to improved stroke rehabilitation outcomes.

Key inclusion criteria:

• Ischaemic stroke
• Within 5 weeks of date of stroke
• Arm weakness (does not have to be present at time of study, but should have been there initially), but still able to manipulate a joystick

Contact details:

Dr Tina Kaffenberger
Neurologist and PhD Candidate, The Florey / Austin Health
Email: tina.kaffenberger@florey.edu.au
Phone: 03 9035 7341

Hunter Stroke Research Volunteer Register

Location: Newcastle - Hunter Region

While the volunteer register is not a specific research project, it is a local solution to link participants with research.

The Hunter Stroke Research Volunteer Register needs people who have had a stroke or transient ischaemic attack (TIA) to help researchers make new discoveries.

If you register, you will join a list of people with stroke or TIA who are interested in volunteering for research studies. By joining the register, you will be contacted when researchers need people like yourself to participate in important research.

Your participation will help us to find new ways to prevent strokes, and to advance stroke and TIA rehabilitation and recovery, here in the Hunter and around the world.

See their website at the Hunter Medical Research Institute to find out more and register.

Phone: 02 4042 0093
Email: strokeregister@hmri.org.au

Canadian Stroke Engine online survey

Strokengine.ca has information on stroke rehabilitation and recovery in Canada. It includes information for patients and families as well as valuable tools for clinicians, including interventions, assessments and an e-learning platform.

More than 48,000 people a month — 600,000 a year — visit the website.

They want to improve the website and there is an online survey to gather your feedback. The survey can be found by clicking on the black tab on the right-hand side of each page on their website.