None listed
Conditions
Brief summary
This research study is examining whether patient education booklets and videos are a clear and informative way of communicating information about the safety, effectiveness, accessibility and affordability of experimental stem cell treatments (i.e. stem cell injections to the brain, spinal cord, vein, artery or stomach) offered by private clinics in China, India, Russia and South America.
Interventions
This study will be conducted online. Participants will be randomly allocated to one of two intervention groups (Arm 1, 2) or one control group (Arm 3: discussed in the next section). First, participants in Arms 1 and 2 will be asked to provide some background information (e.g., age, gender, stroke type/year) and details of their current physical, cognitive and emotional functioning. Immediately after this, participants will be asked to complete a brief survey (6 questions) about experimental stem cell treatments (e.g. perceived risks, benefits, accessibility, affordability). Arm 1: Participants in Arm 1 will then be directed via a web link to an information booklet produced by the International Society for Stem Cell Research (ISSCR). Topics covered in the booklet include: what are stem cells, the risks and benefits associated with different types of stem cell treatments, and the difference between treatments offered by private clinics and those offered within clinical trials. The booklet is expected to take approximately 30 minutes to read and participants will need to do so at that time. After confirming that they have read the booklet, participants will be asked to recomplete the previous survey about experimental stem cell treatments. The first stage of the study ends here for Arm 1. Participants will then be emailed 30-days after completing this stage to reconfirm their attitudes toward experimental stem cell treatments by completing the previously administered survey. Arm 2: Participants in Arm 2 will then be directed via a web link to watch a patient information video (1.17 minutes in length) produced by the Stem Cell Network. Topics covered in the video include: the current state of stem cell treatment research, the risks associated with having experimental stem cell treatments, and how researchers and regulatory bodies determine if treatments are safe and effective for patients to use. After confirming that they have watched the video, participants will be asked to recomplete the previous survey about experimental stem cell treatments. The first stage of the study ends here for Arm 2. Participants will then be emailed 30-days after completing this stage to reconfirm their attitudes toward experimental stem cell treatments by completing the previously administered survey.
Sponsors
Study design
Eligibility
Inclusion criteria
English-speaking, adult, stroke survivors who have not previously had experimental stem cell injections, either as a treatment for their stroke/stroke-related symptoms (e.g. pain), or any other medical or neurological disorder, and who are able to provide consent (personally or via a third party).
Exclusion criteria
Stroke survivors aged less than 18 years (at time of survey) and/or have previously had experimental stem cell injections, either as a treatment for their stroke/stroke-related symptoms (e.g. pain), or other medical or neurological disorder.