Parkinson’s disease is the second most common neurodegenerative disease. The disease is more complex than previously thought, with a great variety of symptoms, and much variability amongst patients. The information collected in CaPRI will allow researchers to conduct critical studies to address these issues and develop tests to diagnose and improve treatments for people with PD. In addition, CaPRI has partnered with the Canadian Open Parkinson Network (C-OPN) to expand its research potential Canada wide. Aligned with CaPRI, the goal of C-OPN is to join forces with clinicians and researchers across Canada to accelerate research in Parkinson’s disease. If you consent to be part of CaPRI, you are also consenting to be part of C-OPN.
Your participation is essential to better understand Parkinson’s disease, and for future development of innovative therapies. Whether you have Parkinson’s disease or are healthy, your participation can make a difference in helping researchers find breakthroughs that can dramatically improve the quality of life for people with PD. We cannot make any strides in the search for early diagnosis, better treatments or a cure for PD without the help of volunteers.
When you participate, you will have the opportunity to:
- Participate in the creation of a patient registry that allows researchers at the University of Calgary to invite you to participate in research or clinical studies
- Participate in the creation of a national database collecting information on people with Parkinson’s disease or Parkinson Plus Syndrome for researchers across Canada
- Participate in the creation of a national biobank for Parkinson’s disease or Parkinson Plus Syndrome for researchers
- Learn more about other research opportunities happening across Canada
What is required?
All you would need to do is complete some questionnaires either online, over the phone, or in-person based on your preference, and would include the following:
- A questionnaire about your background and health
- An assessment of your mood, memory and thinking
- A blood draw
Participant with Parkinson’s disease or Parkinson Plus:
- A motor exam
Additionally, you may be asked to come for in-person visits at the University of Calgary’s Foothills Campus.
You would also complete follow-up phone or online questionnaires at 18 month intervals.
Frequently Asked Questions
It is a collection of information that will be used to advance the understanding and knowledge of Parkinson’s disease (PD). The purpose of the CaPRI Registry is to facilitate contact between ongoing research studies and participants who wish to contribute to the development and improvement of treatments for PD.
Only authorized members of the research team will have access to the information collected in CaPRI.
The collected information is stored in a secure electronic database that has been approved by Alberta Health Services and is in compliance with the Health Information Act.
No. While we do need people with Parkinson’s or Parkinson Plus, we ALSO need participants who do not have Parkinson’s or any other neurological disease to act as controls for the CaPRI registry. So family, friends, caregivers or anyone who is over 40 years old and is eligible to be a control is encouraged to participate.
Participating in CaPRI is voluntary, confidential and free. When you consent to be part of CaPRI, you are also consenting to be part of C-OPN (Canada Open Parkinson Network). All you would need to do is complete some questionnaires either online, over the phone, or in-person based on your preference. Additionally, you may be asked to come for in-person visits at the University of Calgary’s Foothills Campus. You would also complete follow-up (phone or online) questionnaires at 18 month intervals. You may withdraw from the study at any time.
The study visits would take place at the University of Calgary’s Foothills Campus.
Participating in CaPRI is completely voluntary and you have the right to withdraw at any time, for whatever reason, without risking loss of present or future care you would otherwise expect to receive.
Check out the Research Studies page to see what studies are currently available
When someone contacts you about participating in a research project, you have the choice of deciding whether you want to participate in that project or not. The choice is entirely up to you and does not affect your ongoing care or level of treatment. You can continue to remain in the registry to be contacted for future projects that you are eligible for and might wish to participate in.
Contact us to learn more about how you can get started.