CCDP Data Registry

Established in 2017, and in collaboration with the BC Women’s Complex Chronic Diseases Program patients are invited to participate in the CCDP Data Registry.

The data registry collects prospective data to add to the sparse available clinical and spectrum of care information characterizing the patient population which will lead to a better understanding of these debilitating conditions. Ultimately, the information obtained from the CCDP data registry could lead to improved assessments and therapeutic interventions for this unique population in the future. The data collected reflects patient history and demographics, pain, fatigue, sleep quality, psycho-social, and quality of life. This includes the completion of validated questionnaires as baseline, 6 months, discharge, and 6 months post-discharge. Currently, over 500 participants have been enrolled between 2017-2023.

The CCDP Data Registry presents a unique opportunity to characterize BC patients with CCDs that are seen by this provincial referral service. The information obtained from this registry will hopefully lead to improved assessments and therapeutic interventions for the tens of thousands of individuals in BC with symptoms or a diagnosis of Fibromyalgia, Chronic Fatigue Syndrome and/or Chronic Lyme-Like Syndrome.