Q: Why am I receiving this?

If you are a patient or a family of the neuroinflammatory clinic, you will likely receive an email to complete our Neuroinflammatory Clinic Questionnaires and clinical information prior to your appointment. All patients, whether enrolled or not enrolled in our research studies are invited to complete the clinic questionnaires.

Q: What will the questionnaires ask?

The clinic questionnaires will ask about overall health and well-being (e.g., mood, fatigue, physical activity, sleep, and anxiety).
As we continue to host virtual appointments, questionnaires will also ask for height, weight, visual acuity, and demographic background.

Q: How long will the questionnaire take?

We’ve found most of our patients and families complete the questionnaires within 30-40 minutes.

Q: Why is this important?

The questionnaires are important tools for helping us measure and screen for physical and mental health concerns. They are validated questionnaires and the results help us provide the appropriate care for you or your child. Additionally, if you or your child consented to participate in a research study (e.g., the Neuroinflammatory Patient Registry),  the information collected on these questionnaires may be analyzed and published as group data in the future. Your identity will not be disclosed in this process. This data helps us learn more about neuroinflammatory conditions so that we can better manage them. You can view some of our ongoing research here.

Q: What if I have multiple appointments within a short time-frame? Do I have to keep complete the questionnaire each time?

We recommend completing the questionnaires at least once every 6 months.
For example, if you have an appointment with us in January and another one in March, you are not required to complete the questionnaire. But if you have an appointment in January and another one in September, it is highly encouraged to complete the questionnaire so that we have accurate results that reflect your or your child’s current health.

Q: How is the information collected and stored?

The questionnaires are administered through REDCap, a secure, web-based application that was designed exclusively to support data capture for research studies. REDCap is developed and maintained by a team at Vanderbilt University and licensed free of charge by the Research Institute at The Hospital for Sick Children. The application and data are housed on servers provided by The Hospital for Sick Children. These servers are located within SickKids secure data center.

If you have any additional questions, please contact mina.ly@sickkids.ca.