DANILDA – The First Danish National Interstitial Lung Disease Registry

Abstract

Objectives: Interstitial lung diseases (ILD) form a heterogeneous group of diseases, often with progressive inflammation or fibrosis resulting in dyspnoea, cough, respiratory failure and death. With 5.77 mill inhabitants, Denmark has three tertiary ILD centres, which according to the Ministry of Health’s speciality planning are established centres for diagnostics and treatment. However, as the majority of ILDs are rare with only limited knowledge on epidemiology, diagnostic investigations, treatment and long-term prognosis, systematic data registration is warranted in order to obtain specific information on ILDs.

Methods: Retro- and prospective data on all patients diagnosed with an ILD at one of three ILD centres will be included in DANILDA after obtained informed consent and approvals from the Danish Patient Safety and the Danish Data Protection Agency. DANILDA will include individual data on baseline characteristics, symptoms, occupation, exposure, connective tissue disease, comorbidities, medication, diagnostic investigations (e.g. physiological tests, blood tests, HRCT, bronchoscopic cyto-histological samples, echocardiography, right heart catheterization), treatment and side effects, and hospitalisations. Diagnoses will be subjected to multidisciplinary team discussions at the discretion of the treating centre.

Results: DANILDA was launched in January 2018, and at 1 December 2018, 250 patients were included.

Conclusions: DANILDA is the first Danish ILD registry that will not only include idiopathic pulmonary fibrosis, but also other ILD subtypes. DANILDA will provide data on epidemiology, identify referral and diagnostic bottle necks, and assess treatment strategies and prognosis of Danish patients with ILD.