Exploring Clinical and Epidemiological Characteristics of Interstitial Lung Diseases: Rationale, Aims, and Design of a Nationwide Prospective Registry—The EXCITING-ILD Registry
Table 3
List of variables to be documented (if available) at baseline and scheduled visits.
Baseline
Follow-up every 6 months
Eligibility criteria
✕
Demographic/sociodemographic data
✕
Gender, country of birth, place of residence with zip code, profession, year of birth, and date of ILD first diagnosis if available
✕
Weight and height, BMI
✕
✕
Incapacitated for work caused by ILD
✕
✕
Health insurance coverage
✕
✕
Risk factors
✕
Smoking status, profession, familial ILD, HIV
Profession
✕
✕
Profession, in work, unemployed, student, retired, other, incapacitated for work caused by ILD, disease-related absent days past six months
Subtype of the ILD, date of diagnosis, multidisciplinary diagnosed (e.g., ILD board), onset of first symptoms
✕
Surgical lung biopsy
✕
CT
CT scan also analysing whether HRCT (thin-section CT, thin-slice spiral CT, <2 mm thickness) was performed
✕
✕
Lung function data
(, FVC, FEV1, FEV1/FVC, DLCO-SB, DLCO-VA, TLC) at time of diagnosis and current values
✕
✕
6-minute walking test (6-MWT) distance at time of diagnosis and current values
✕
✕
Previous and current therapy of ILD
✕
✕
(details and dosage)
Other therapies
✕
✕
Physiotherapy or treatment from other allied healthcare professionals, long-term oxygen therapy, noninvasive ventilation, lung transplantation or listed for lung transplantation, patient support group, participation in rehabilitation programmes, others
Hospitalisation
✕
✕
Caused by ILD or ILD-associated during the last 6 months
Not caused by ILD
Out-patient clinic
✕
✕
Was the patient seen during the last 6 months by the reporting physician/by additional physicians
Medical aids and appliances
✕
✕
Vaporiser, aids for elimination of secretions, other due to ILD (e.g., wheelchair)
