Frequently asked questions

What is the Quebec Pain Registry?

R:The Registry is a unique database composed of anonymized data collected from patients with chronic pain from several tertiary pain clinics across Quebec. Data are collected at baseline and at pre-specified follow-up intervals. The variables of interest include pain descriptors, treatments used (pharmacological and non-pharmacological), sleep, mood, quality of life and other biopsychosocial measures.

Why is this information being collected?

R:Chronic pain is a devastating health condition with enormous direct and indirect costs to society. Descriptive epidemiological studies are needed to better understand this population and to identify risk factors for both improvements as well as deteriorations in pain and other comorbidities.

The Registry serves two main functions: data may be used for administrative purposes for participating clinics (all data), or by qualified researchers with scientifically and ethically approved research protocols (consented patients only). 

How can a researcher access Registry data?

R: Researchers should become familiar with the data access agreement policy document and should complete a data access request. This will be reviewed by the Registry Scientific Committee and, if approved, a quote for data access will be generated. Note that raw data will not be released unless specific criteria are met.

Can researchers browse Registry data in order to determine if the Registry has the information needed to conduct a study?

R: Researchers cannot access  registry data without approval from the  Registry Scientific Committee. However, a description of data variables is available online. Researchers can contact the Registry team for several reasons:
  • To find out more about the data contained in the Quebec Pain Registry;
  • To request aggregated data through the data request process (or through our on-line data request form);
  • To get an estimate of the data access cost for budgeting purposes; or
  • To get a preliminary opinion on whether the request is likely to be approved or what conditions must be met to approve the request.

Is there a cost to access Registry data?

R: Yes. The Registry has developed a pricing model that will allow for cost estimates under various request scenarios. The final estimate will always incorporate a combination of several cost components. The analysis plan, data extraction and data formatting components of the model vary in complexity depending on the hours of work required to meet the client’s needs.

The cost estimate will also be a function of the client’s status within the Quebec Pain Research Network (QPRN) and the general scientific community. Since the Registry is a major component of the QORN, and was built with the support of the academic network members as well as partners from the pharmaceutical industry, data costs are a reflection of the level of engagement that the client has with the QPRN. 

How is the Registry data protected?

R:Registry data are stored on secure servers that are FDA 21 CFR compliant.

What types of projects is Registry data used for?

R: Potential projects include:
  • Epidemiological studies
  • Feasibility of recruitment for clinical trials
  • Patient screening for clinical studies
  • Provision of raw datasets (under specific conditions (e.g., PhD thesis))
  • Satellite projects add to the Registry data to projects which involve collection of additional data (e.g., study linking some of the Registry data to information contained in governmental administrative databases such as the RAMQ.
  • Resource Centre -e.g., publications, slide sets or web resources that use QPR data

Where are the Registry Data collected?

R:Data are collected through patient- and nurse-administered questionnaires at tertiary pain centres across Quebec.

 

If you have any further questions please do not hestitate to contact us.