Participation in the cohort

Inclusion in the cohort is proposed to all patients with Parkinson's disease (or related disorder) followed up in the Parkinson Expert Centers or sites members of the NS-PARK network.

 

Individuals at risk of developing Parkinson's disease (or related disorder) may also be included in the cohort. These are i) people related to a PD patient, or ii) with a genetic risk factor for the disease, or iii) with a prodromal form1 of the disease, according to the current diagnostic criteria.

 

During a follow-up consultation, the neurologist of the site participating in the project will present the objectives and the modalities of participation in the cohort to the patient (Information & Opposition), orally and with a written information notice. In the patient wishes to participate, his express consent is collected by the physician.

 

1The  prodromal phase of a disease is the period during which symptoms, generally benign, announce the onset of the main phase of the disease, whch is sometimes remote.

 

 

Access to research results

 

A dedicated section (Publications), which is regularly updated, provides access to the global results of research conducted on the NS-PARK cohort.

 

Within this cohort, clinical, biological and imaging data are collected longitudinally:

 

  • Demographic data (e.g. age)
  • Clinical data related to Parkinson's disease
  • Biological data from optional or existing samples (care or other research projects)
  • Imaging data from optional or existing imaging exams (care or other research projects)

 

The researchers working on the study will link all these data during analyses aiming to better understand Parkinson's disease and to indentify subgroups of patients sharing common progression profiles of the disease, in order to eventually propose targeted therapies.

 

 

These analyses will thus allow to answer:

 

 

  • To associated objectives; researchers working on Parkinson's disease can indeed conduct data analysis projects on the NS-PARK cohort, in order to answer scientific questions on the same theme. These studies must be validated by the Scientific Committee of the cohort and have the necessary regulatory authorizations.

 

 


Patient Information:

You are note yet participating in the cohort and wish to join:

 

- You must be followed up in a participating hospital

- Talk to your neurologist or the NS-PARK cohort referent at your follow-up center. You can find the contact information in the Contacts section

You are participating in the NS-PARK cohort and would like additional information on:

 

- The treatment of your data, please see the dedicated section Your data

- The use of your data, please read the list of studies associated with the cohort

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