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Enrolling by invitationNCT03409653Updated Feb 8, 2023

Complex Chronic Diseases Program Data Registry

An observational study in Fibromyalgia, Chronic Fatigue Syndrome and Myalgic Encephalomyelitis, sponsored by BC Women's Hospital & Health Centre. Enrolling by invitation at 1 site in Canada. Open to participants aged 18 Years and older. Per ClinicalTrials.gov, last updated 2023-02-08.

Sponsored by BC Women's Hospital & Health Centre · Observational

Study type
Observational
Model
Cohort
Time perspective
Prospective
Enrollment
1,300
Ages
18 Years and older
Sex
All
01

Study 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.

Read the 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.
02

Conditions studied

  • Fibromyalgia
  • Chronic Fatigue Syndrome
  • Myalgic Encephalomyelitis
  • Chronic Lyme-Like Syndrome

Keywords

  • fatigue
  • pain
  • chronic pain
  • Data registry
  • ME/CFS
  • CFS
  • FM
  • Post-exertional malaise
  • Lyme
03

Who can participate

Ages eligible
18 Years and older
Sexes eligible
All
Accepts healthy volunteers
No
Sampling method
Non-probability sample

Study population

Patients of the Complex Chronic Diseases Program at BC Women's Hospital + Health Centre all have signs, symptoms or a diagnosis of: Fibromyalgia (FM), Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (ME/CFS), and/or Chronic Lyme-Like Syndrome (CLLS).

The factors involved in causing all three of these diseases are not well understood (Jain et al. 2003, Wolfe et al. 2010, Carruthers et al. 2003). Furthermore, symptoms, severity of symptoms and the effects of all of these complex chronic diseases can vary greatly among people with the same diagnosis.

All of these conditions are currently diagnosed according to the particular group of symptoms described by the patient.

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

Exclusion Criteria:

  • Have not completed the Standardized Questionnaires booklet prior to the initial intake assessment.
04

Study design

Observational model
Cohort
Time perspective
Prospective
Enrollment
1,300 participants (estimated)
Target follow-up
21 Months
Patient registry
Yes
05

What researchers measure

Primary outcomes

  1. Change in quality of life

    Change in self-reported quality of life assessed by structured questionnaire (36 Item Short Form Health Survey (SF-36))

    Time frame: Baseline (pre-intake), 6 months, discharge (an average of 21 months), 3 months post-discharge

Secondary outcomes

  1. Brief Pain Inventory Short Form (BPI-SF)

    The BPI-SF is a self-reported standard questionnaire used to evaluate the severity of pain and the impact of this pain on the patient's daily functioning.

    Time frame: Baseline (pre-intake), 6 months, discharge (an average of 21 months), 3 months post-discharge

  2. Fatigue Severity Scale (FSS)

    The FSS is a self-reported standard questionnaire that uses a scale to measures the severity of the fatigue and its effect on a person's activities and lifestyles in patients with a variety of disorders. It uses a 7- point Liker scale, where 1=Strongly Disagree and 7= Strongly agree. Score range is 1-7. Higher schore indicates more severe fatigue.

    Time frame: Baseline (pre-intake), 6 months, discharge (an average of 21 months), 3 months post-discharge

  3. McGill Pain Questionnaire Short Form

    The McGill Pain Questionnaire Short Form is self-reported standard questionnaire. It is used to describes the subjective overall intensity of the total pain experience.

    Time frame: Baseline (pre-intake), 6 months, discharge (an average of 21 months), 3 months post-discharge

  4. Pittsburgh Sleep Quality Index (PSQI)

    The PSQI is a self-reported standard questionnaires. It is used to assess sleep quality and disturbances.

    Time frame: Baseline (pre-intake), 6 months, discharge (an average of 21 months), 3 months post-discharge

  5. Patient Health Questionnaire 9 (PHQ - 9)

    The PHQ-9 is a self-reported standard questionnaire used to screen, diagnose, monitor and measure the severity of depression.

    Time frame: Baseline (pre-intake), 6 months, discharge (an average of 21 months), 3 months post-discharge

  6. Generalized Anxiety Disorder - 7 item (GAD - 7)

    The GAD-7 is a self-reported standard questionnaire used to measures the severity of various signs of general anxiety disorder according to response categories with assigned points.

    Time frame: Baseline (pre-intake), 6 months, discharge (an average of 21 months), 3 months post-discharge

06

Study locations

1 site
  • BC Women's Hospital + Health Centre
    Vancouver, British Columbia V6H 3N1, Canada
07

References and documents

Individual participant data

Plan to share: No

No publications or documents are linked to this record.

08

Registry details

Key details

Study ID
NCT03409653
Lead sponsor
BC Women's Hospital & Health Centre
Collaborators
Ministry of Health, Province of British Columbia
Responsible party
Luis Nacul (Medical Director CCDP, Complex Chronic Care Clinic, BC Women's Hospital & Health Centre) — Principal investigator
First posted
Jan 24, 2018
Start date
Jun 12, 2017
Primary completion
Sep 30, 2022
Completion
Sep 30, 2025 (estimated)
Last update
Feb 8, 2023

Study contacts

Luis C Nacul, MD
principal investigator · Medical Director CCDP, Complex Chronic Care Clinic
Wee-Shian Chan, MD
study chair · Department Head, Medicine

Oversight

Data monitoring committee
No
FDA-regulated drug
No
FDA-regulated device
No
View the source record on ClinicalTrials.gov ↗

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