Background

Bronchiectasis and non-tuberculous mycobacterial (NTM) lung disease have long been managed using evidence borrowed from other conditions and from cohorts assembled elsewhere. Canada has lacked a national platform describing who these patients are, how they are cared for, how care differs across the country, and what happens to them over time. Without that, it is difficult to benchmark practice, identify gaps in access, or make the case for trials in Canadian centres.

What we are doing

We built one. CanBE-NTM is a multi-centre prospective registry collecting standardised clinical data, patient-reported outcomes, and paired biological samples from adults with bronchiectasis and NTM lung disease across Canada. Recruitment began in Alberta and continues to expand to additional centres, with participants followed longitudinally rather than captured at a single visit.

What distinguishes the registry from a conventional observational cohort is the biospecimen layer. Standardised case report forms and procedures support longitudinal collection of paired sputum and blood, including sampling at the time of exacerbation and again during recovery — so exposures and events that cannot be reliably reconstructed after the fact are captured as they happen. That design makes the registry both a description of Canadian practice and a validation platform for our laboratory work.

The registry is aligned with international bronchiectasis registries, allowing Canadian findings to be tested for generalisability beyond our own population. De-identified data are shared under controlled access, and registry infrastructure feeds directly into national guideline work and into BXConnect, our patient- and clinician-facing resource.

Why it matters

A registry is quiet infrastructure, and it is the reason much of the rest is possible. It describes the Canadian patient population, supplies the numbers that study design depends on, gives Canadian sites the track record needed to be included in international trials, and turns a scattered patient population into a community that can be studied, served, and eventually offered better options.

Learn more at CanBE-NTM.ca.