[REGIS--Romanian National Registry for Interstitial Lung Diseases and Sarcoidosis: launch of the website and building-up the database].

Abstract

REGIS--Romanian National Registry for Interstitial Lung Diseases and Sarcoidosis: launch of the website and building-up the database Interstitial lung diseases (ILD) comprise about 200 different diseases with low prevalence, some evolving towards irreversible lung fibrosis. The diagnostic of each disease involves complex investigations (high resolution CT scan, broncho-alveolar lavage, complex lung function testing, surgical biopsy), but the main element is the expertise of the clinician and the multidisciplinary diagnostic approach. The creation of a national registry for ILD and sarcoidosis allows putting together in the same database numerous cases, now spread around the country. REGIS is the initiative of a group of physicians from "Marius Nasta" Institute of Pulmonology Bucharest and from the Pulmonology Dept. of "Victor Babes" Infectious Diseases Hospital, Timişoara. REGIS is an online registry, available at www. regis.ro, consisting of several components: 1. The registry per se, in which the accredited physicians will be able to feed information about their patients, by filling-in a questionnaire 2. Educational platform, containing a collection of clinical cases organized according to diagnosis, which is generated anonymously from the data from the registry 3. Patients' page, with information on ILD in general and on the most frequent diseases in the group. Expected results are: increasing the physicians' knowledge on ILDs, informing correctly the patients, bringing up to light new cases previously not diagnosed, building up a database for research (prevalence studies, risk factor studies, selection of patients for clinical trials), creating a base for a future national health programme dedicated to idiopathic pulmonary fibrosis patients, preparing future projects for development of a Romanian centre for lung transplantation.

• Authors: Irina Strâmbu
• Journal: Pneumologia (Bucharest, Romania) (Pneumologia) 2014 Apr-Jun Vol. 63 Issue 2 Pg. 96-9 ISSN: 2067-2993 [Print] Romania
• Vernacular Title: REGIS--Registrul Naţional de Pneumopatii Interstiţiale Difuze şi Sarcoidoză: lansarea site-ulu web şi modul de alcătuire a bazei de date.
• PMID: 25241556 (Publication Type: English Abstract, Journal Article)

Topics

• Databases, Factual
• Humans
• Lung Diseases, Interstitial (classification, diagnosis, epidemiology)
• Medical Records Systems, Computerized (standards, statistics & numerical data)
• Prevalence
• Pulmonary Medicine
• Registries (standards, statistics & numerical data)
• Romania (epidemiology)
• Sarcoidosis, Pulmonary (diagnosis)