Participant registry

Anne-Louise Lafontaine
Sylvain Chouinard
Mélanie Langlois
Alex Desautels
Emmanuelle Pourcher
Calvin Melmed

The participant registry is a database of participants that centralizes people with Parkinson's disease who wish to participate in research projects. This first infrastructure is the determining factor in the implementation of the 3 Quebec Parkinson Network axes.
It makes possible to ensure optimal recruitment for faster data acquisition to be included in the various databases QPN.

The storage system and centralization of such potential participants can perform their selection according to inclusion and exclusion of specific criteria for each study.

Patient registry use

Documents to be submitted by the researcher in order to use the patient registry
Every QPN member will first need to submit:

  • A project summary
  • Inclusion and exclusion criteria (this will allow appropriate patient selection by the network coordinator)
  • Consent forms (in French and English if applicable)
  • A copy of the ethics approval of the project

Initial contact form

After having reveived the participants list, you will have to fill in the following form (initial contact form) once you have contacted the participants :

This will allow us to :
- know the participants who actually participate in the study for which they were selected
- Know the non involved participants in the study and keep them available for further studies
- keep the participation history for each participant

This procedure is necessary in order to retain maximum available participants for the various studies. Once all the contact forms are received , we can provide a new list of participants if necessary.

Participants may be involved in several studies simultaneously. However we ensure that participants already involved in a study are not selected for further study deemed incompatible with the first one.

List of available criteria:

General criteria:

  • Sex
  • Date of birth
  • Laterality (right or left)
  • Mother tongue / spoken language
  • Education level
  • Smoking (yes/no/formerly)
  • Alcohol consumption (yes/no/formerly)
  • Coffee consumption (yes/no/formerly)
  • MRI compatibility

Clinical criteria:

  • Confirmation of the Parkinson's disease diagnosis
    (sure/relatively sure/unlikely/uncertain)
  • Atypical Parkinsonian syndromes
  • Date of diagnosis
  • Hoehn and Yahr
  • Asymmetry of symptoms
  • Dominant symptoms
  • first motor symptoms
  • Presence of dyskinesias
  • Presence of fluctuations
  • Psychiatric Disorders (anxiety/depression/hallucinations)
  • Cognitive impairment (yes/no)
  • Presence of dementia (yes/no)
  • Family History of Parkinson's and related disease