Complex Chronic Diseases Program Data Registry

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Brief Title

Complex Chronic Diseases Program Data Registry

Official Title

Complex Chronic Diseases Program Data Registry

Brief Summary

      The purpose of this data registry is to prospectively collect data from patients referred to
      an Complex Chronic Diseases Program (CCDP) at BC Women's Hospital + Health Centre to assess
      the quality of life of the CCDP Patients before, during and after their care at the CCDP.
    

Detailed Description

      1. Before their initial intake appointment, all CCDP patients are given a patient binder
           that includes the baseline Standardized Questionnaires. These are clinical
           questionnaires that all patients complete regardless of whether or not they consent to
           participation in research. In addition to the questionnaires completed at baseline,
           patients who consent to participate in the data registry will complete the
           questionnaires, via email or paper copy, at the following time points: approximately 6
           months after intake, at discharge and 3 months post-discharge.

        2. Patients who consent to the data registry will also be asked to complete a short
           questionnaire collecting basic demographic information at baseline. The demographic
           questionnaire will be either mailed to their home or sent via an online link; the
           investigators will ask participants to complete this form either before or when they
           come in for their first in-person visit at the CCDP.

        3. Additional data will be collected and entered from the clinical chart. Specifically,
           after the patient's initial clinic appointment, the Research Coordinator or designate
           will enter data points from the Interdisciplinary Assessment Tool, into REDCap.
    


Study Type

Observational [Patient Registry]


Primary Outcome

Change in quality of life

Secondary Outcome

 Brief Pain Inventory Short Form (BPI-SF)

Condition

Fibromyalgia



Publications

* Includes publications given by the data provider as well as publications identified by National Clinical Trials Identifier (NCT ID) in Medline.

Recruitment Information



Estimated Enrollment

1300

Start Date

June 12, 2017

Completion Date

September 30, 2021

Primary Completion Date

September 30, 2021

Eligibility Criteria

        Inclusion Criteria:

          -  Newly referred patients of the Complex Chronic Diseases Program

          -  Must be able to read and understand English

          -  18 years of age or older

        Exclusion Criteria:

          -  Have not completed the Standardized Questionnaires booklet prior to the initial intake
             assessment.
      

Gender

All

Ages

18 Years - N/A

Accepts Healthy Volunteers

No

Contacts

Luis C Nacul, MD, , 

Location Countries

Canada

Location Countries

Canada

Administrative Informations


NCT ID

NCT03409653

Organization ID

H16-01648


Responsible Party

Principal Investigator

Study Sponsor

BC Women's Hospital & Health Centre

Collaborators

 Ministry of Health, Province of British Columbia

Study Sponsor

Luis C Nacul, MD, Principal Investigator, Medical Director CCDP, Complex Chronic Care Clinic


Verification Date

January 2020