Complex Chronic Diseases Program Data Registry

BC Women's Hospital & Health Centre

Status: Invitation-only

Conditions: Myalgic Encephalomyelitis; Fibromyalgia; Chronic Lyme-Like Syndrome; Chronic Fatigue Syndrome

Study type: Observational

Funder types: Other

Identifiers

NCT03409653

H16-01648

Details and patient eligibility

About

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.

Full 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.

Enrollment: 1,300 estimated patients

Sex: All

Ages: 18+ years old

Volunteers: No Healthy Volunteers

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.