How will I be contacted?
The Project Coordinator for the NPD (Neurological Patient Database), Karly Neath-Tavares, will be actively recruiting patients who have suffered a stroke or who have other neurological pathologies with the help of staff at the Grand River Hospital and Freeport Health Centre. You will be informed of the purpose for the visit and asked if you would be willing to participate in the NPD. Your written consent and contact information will be obtained.
What kind of information is stored in the database?
The database contains personal and medical information. For example, contact information (address, phone number) birth date, hospital number, is collected as well as details of your condition, i.e. if you have had a stroke, the date, how you have been affected. The details in CT and MRI scan reports are also included. If you become involved in the NPD, researchers may request a copy of CT or MRI scans that you have already completed.
How will personal information be protected?
All personal information is kept strictly confidential in a database that is always password protected. Only research staff associated with the Neurological Patient Database (or the particular study that you completed) will ever have access to your information. Further, contact information is only given to researchers after their project has received full ethics clearance from the University of Waterloo.
Will this research affect my treatment?
Your decision to join the database will be kept confidential and will not affect any therapies or care given to you at the hospital. The studies are for research purposes only, and we are not offering additional care, nor can we offer a second opinion on any prior diagnosis given by medical professionals. However, you will be contributing to research that aims to refine methods of rehabilitation and possibly aid in discovering new rehabilitation techniques.
How long are the studies?
Studies often take about 1 hour to complete. It varies depending on the type of study being conducted. When you are contacted by a researcher, they will give you all the details of the study.
How will I get to the study location?
Transportation is provided if needed; when a researcher contacts you, he/she will ask if you require a wheelchair accessible or a regular taxi. If you prefer to drive to the University of Waterloo, or get a ride, the researcher will give you a parking pass, or will reimburse you for parking fees. In some cases, a researcher may be able to meet you at your residence or in a hospital setting, but most studies occur on the university campus.
How often will I be called?
You may be called as often as once a month. At other times it may be several months in between phone calls. How often you will be called depends on the number of participants needed for the various studies. Your name will stay in our database for future studies.
Will I be told how I did on tests?
Group (rather than individual) results are communicated to participants upon request. Just contact the researcher to let him/her know you would like to be sent the research results.
What are the risks involved?
With the paper and pencil and computer tasks, there are no risks involved. You will be informed in advance if there are any risks associated with participating in a particular study. Whether or not you choose to participate in a study is up to you. Your decision about participating in a given study does not impact your eligibility to participate in future studies.