This first infrastructure is of decisive use in the operation of the 3 axes of the QPN. It ensures optimal recruitment for the faster acquisition of data that will be included in the various QPN databases.
The system for storing and centralizing these potential participants allows for their selection according to inclusion and exclusion criteria specific to each study.
Use of the Participant Registry
Documents to be submitted by the researcher for use of the registry
All members of the QPN must first submit:
- A summary of the project
- Inclusion and exclusion criteria (to enable coordinators to select appropriate patients)
- Consent forms (in French and English if applicable)
- A copy of the acceptance letter from the ethics committee where the study will take place
- Signed “Research Team Commitment (PDF – 81,0 KB, in French only)” document
- Send it by email to reseauparkinsonquebec@gmail.com
List of available criteria
- Sex
- Age at time of visit
- Living situation
- Laterality (left or right)
- Mother tongue/spoken language
- Level of education
- Confirmation of diagnosis of idiopathic Parkinson’s disease
(certain/relatively certain/unlikely/unsure) - Atypical Parkinsonian syndromes
(AMS/PSP/DCB/DCL/FTD and ET) - Nature of first symptoms (tremor/rigidity/bradykinesia/postural instability)
- Year of onset of first symptoms
- Year of diagnosis
- Hoehn and Yahr
- Current symptom dominance (tremor/rigidity/bradykinesia/postural instability)
- Asymmetry of symptoms (right/left)
- Dyskinesias (none/minimal/moderate/major)
- Fluctuations
- Motor blocking
- History: Falls
- Antiparkinsonian treatment (L-Dopa/agonists/other)
- Hypertension / Hypotension
- Diabetes
- Constipation
- Psychiatric disorders (anxiety/depression/hallucinations/impulsions/compulsions)
- Treatments for psychiatric disorders
- Cognitive disorders (yes/no)
- Presence of dementia (yes/no)
- Family history of Parkinson’s disease or related disorders
- Genetic information available
- Imaging available