Participate

Why Participate?

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.

We cannot make any strides in the search for early diagnosis, better treatments or a cure for PD without the help of volunteers. 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.

Benefits:

  • Participating in research studies is an invaluable way of contributing toward the process of discovering new and improved treatments for PD
  • Participating allows you to receive notification of new scientific research study participation opportunities
  • Contribution of your medical data helps improve the understanding of PD, risk factors, disease progression and development of better therapies
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Participating in CaPRI is voluntary, confidential and free. All you would need to do is attend one study visit.

What is required?

All you would need to do is attend one in person study visit that lasts about three to four hours and would include the following:

Everybody:

  • 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

 

The study visit would take place at the Heritage Medical Clinic at the Foothills Hospital Campus.

In addition, you would complete 3 follow-up phone or online questionnaires at 18 month intervals.

Sign Up

Fill out the following form to learn more about participating in the CaPRI Registry

All fields marked with (*) are required.

Have you been diagnosed with Parkinson’s disease?*

I wish to be contacted to receive more information?*

Preferred method of contact* EmailPhone

Frequently Asked Questions

What is a participant registry?

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.

Who has access to my information?

Only authorized members of the research team will have access to the information collected in CaPRI.

How is the privacy of my information protected?

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.

Do I have to have Parkinson’s to participate?

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.

What does my participation involve?

Participating in CaPRI is voluntary, confidential and free. All you would need to do is attend one in person study visit that lasts about three to four hours and then complete 3 follow-up (phone or online) questionnaires at 18 month intervals. You may withdraw from the registry at any time.

Where would I have to go for the study visit?

The study visit would take place at the Heritage Medical Clinic at the Foothills Hospital Campus.

What if I change my mind and no longer wish to participate in CaPRI?

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.

What research studies are current available?

Check out the Research Studies page to see what studies are currently available

Can I choose which research studies I want ot participate in?

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.

How do you get started?

Contact us to learn more about how you can get started.

Contact Us