Request for research participant policy

Request for research participant policy

The National Stroke Foundation regularly receives requests from external researchers who would like to obtain access to consumers to participate in their stroke related research project. Requests come to the Foundation via a range of channels including email, phone, Facebook and enableme.

We have developed a policy for managing requests for research participants.

If you would like to seek our assistance with recruitment of participants for your research, please download the interactive Research participant application form which you can type your responses into, print off and send this to us with a copy of the ethics approval for your study and participant information sheet to, fax to 03 9670 9300 or post to: Level 7, 461 Bourke St, Melbourne VIC 3000. If you would prefer to use the regular PDF form please download here.

National Stroke Foundation role in recruitment to research

  • The Foundation recognises the value of all levels of research and the welfare and experiences of those affected. Likewise, the NSF recognises that many people affected by stroke are interested in research and want to be involved in research projects relevant to them.
  • The Foundation endeavours to assist with the recruitment of participants to take part in research projects and studies, the NSF cannot guarantee securing participants.
  • All requests for the Foundation to assist with the recruitment of participants for research projects must be made on the appropriate application form and must be accompanied by a copy of ethics approval for the study and participant information sheet. Applications cannot be considered by the NSF without ethics approval being obtained and provided to the NSF.
  • The Foundation is committed to providing researchers undertaking stroke-related projects equal opportunity to access those affected by stroke. Access, for approved applications only, will be through mechanisms deemed appropriate by the NSF which may include social media and online forums, through our website, membership database (StrokeConnect and Stroke Support Groups) and health professional networks.
  • The Foundation retains the right to remove listings/postings that do not meet the agreed criteria, and/or if complaints are received concerning the research project.

How decisions will be made

The Foundation has developed the below set of criteria to assess applications:

1. Aims and purpose of the research: the research must support the Foundations vision of “a world free from disability and suffering caused by stroke”. It must have the potential to lead to benefits to people living with, or at risk of stroke. The outcomes should be relevant to stroke survivors and carers. This includes research which:

  • Aims to improve the quality of life for stroke survivors and carers
  • Improves stroke related health services
  • Studies the causes, treatment and rehabilitation of stroke or the welfare and experiences of those affected.
  • Addresses stigma and discrimination

2. Ethics approval: the project must have ethic approval from a Research Ethics Committee

After receiving applications from a researcher for assistance recruiting participants to their study, NSF will assess and notify them of the outcome within two weeks.

Other important information

To ensure compliance with privacy legislation, the Foundation will not approach consumers individually or release consumer details to researchers without the express permission of the individual and will at all times ensure compliance with our Privacy Policy. Subject to compliance with the Foundation Privacy Policy, consumers will be provided with the researcher’s contact details via methods deemed appropriate by the Foundation and asked to contact the researcher directly.

All researchers that receive help from the Foundation recruiting research participants are asked to:

  • Acknowledge that the Foundation takes no responsibility for the research and is not liable for any claims concerning negligence, harm or oversight that might arise during the course of the research.
  • Acknowledge that providing the researchers with access to potential participants, does not represent the Foundation’s endorsement of, or participation in, the research project.
  • Note that the Foundation will publish a disclaimer on the NSF website which will contain a list of research projects that are being promoted by the National Stroke Foundation.