Data Registry (PEARL-NS) | E and CPP IWK Health

Strong research starts with high-quality data.

PEARL-NS transforms patient journeys into evidence and better care for all.

What is PEARL-NS?

Pelvic pain and Endometriosis Assessment and Registry for Longitudinal Outcomes in Nova Scotia (PEARL-NS) is our province-wide data registry that tracks the real-world experiences of individuals living with endometriosis and chronic pelvic pain. By collecting electronic patient-reported outcomes (ePROs) and clinical information over time, the registry helps us understand how symptoms evolve, which treatments work best, and how we can improve patient care across Nova Scotia.

Why PEARL-NS?

PEARL-NS draws its name and inspiration from the process of pearl formation—a symbol of transformation, resilience, and value. Just as a pearl is formed through the gradual layering of nacre in response to a persistent irritant, the registry acknowledges the ongoing pain and challenges faced by individuals with endometriosis and chronic pelvic pain. Through the systematic collection of patient-reported outcomes and clinical data, PEARL-NS captures and layers patient experiences, ultimately transforming them into meaningful insights that inform care, empower patients, and advance research. This name reflects both the lived experience of our patients and the purpose of the registry: to convert challenging journeys into a source of knowledge, advocacy, and healing.

Who Benefits From the Registry?

Patients & Community—Your voice matters! Survey responses help us understand how symptoms change over time and guide improvements in care for everyone living with endometriosis and pelvic pain.
Researchers & Clinicians—High-Quality, Harmonized Data: PEARL-NS offers standardized, longitudinal data using 13 validated tools—an ideal foundation for collaborative research and real-world evidence.
Students & Trainees—A Rich Learning Platform: PEARL-NS provides extensive real-world data for thesis projects, analytics training, and hands-on research experience.
Donors & Innovator—Fueling Innovation and Impact: With past support, PEARL-NS moved from vision to reality. Continued investment will power the growth of the registry, drives new tools and technologies, and speeds discoveries that transform diagnosis, treatment, and care.

What is PEARL-NS?

Why PEARL-NS?

Who Benefits From the Registry?

Patients & Community—Your voice matters! Survey responses help us understand how symptoms change over time and guide improvements in care for everyone living with endometriosis and pelvic pain.

Students & Trainees—A Rich Learning Platform: PEARL-NS provides extensive real-world data for thesis projects, analytics training, and hands-on research experience.

Donors & Innovator—Fueling Innovation and Impact: With past support, PEARL-NS moved from vision to reality. Continued investment will power the growth of the registry, drives new tools and technologies, and speeds discoveries that transform diagnosis, treatment, and care.