IIER-ISCIII Madrid, March 2013 Rare respiratory diseasesregistries included in SpainRDRSociedad Española de Neumología yCirugía Torácica (SEPAR) Beatriz.

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Presentation transcript:

IIER-ISCIII Madrid, March 2013 Rare respiratory diseasesregistries included in SpainRDRSociedad Española de Neumología yCirugía Torácica (SEPAR) Beatriz Lara

IIER-ISCIII Madrid, March 2013 Structure of SEPAR Continuous activity related with rare respiratory disease (RRD) Existing registries IIER-SEPAR collaboration about Spain RDR Aplicability on clinical practice Table of contents:

IIER-ISCIII Madrid, March 2013 Physicians: Pulmonology, Thoracic Surgery, General practicioners, Pediatricians Nurses Physiotherapists Basic researchers Spanish Society of Pulmonology and Thoracic Surgery: >3.500 members 11 Working groups

IIER-ISCIII Madrid, March 2013 Continuous activity related with rare respiratory diseases COPD: Registry of alpha-1-antitrypsin deficency Pulmonar circulation: Pulmonary Hiptertension (registry, PII) IRTS: Inmunodeficiencies and chystic fibrosis (bronchiectasis registry and PII) TyT: Difuse Intersticial Lung diseases (PII) Oncology and Thoracic Surgery (registry and PII) Working groups related with RD:

IIER-ISCIII Madrid, March 2013 Existing registries: 1. Alpha-1-antitrypsin deficiency ( 2. Bronchiectasis ( 3. Work related diseases ( ) 4. Tromboembolic diseases ( ) 5. Pulmonary Hypertension ( ) 6. Mesothelioma 7. Tuberculosis ( ) 8. Neuroendocrin Tumor ( EMETNE-SEPAR) ( separ.es ) separ.es 9. Asbestosis (REPAS) ( ) 10. Metástasis pulmonares ( )

IIER-ISCIII Madrid, March 2013 Rare Respiratory diseases Registries Alpha-1-antitrypsin deficiency (REDAAT) EMETNE Pulmonary Hipertension (REHAP) Ongoing since 1993 Collaborator of AIR Registration open to health professionals (>300 collaborator) Support of diagnoses 455 registered cases Ongoing since 1999 Grupo Cooperativo Español para el estudio de los Tumores Pulmonares Neuroendocrinos 24 centres/1082 registered cases Foundation by SEPAR and SEC since 2004 Collaborator with international Registries Registration restricted to advisory board registered cases Bronchiectasis Ongoing since registered cases

IIER-ISCIII Madrid, March / /2011 2/2012 3/2013 Selection of RRD to register IIER_SEPAR agreement Selection of coordinators Webpage and databases contents Constitution of Advisory Boards Registry working rules document Presentation SpainRDR(SEPAR Congress) 1st research “brainstorming” meeting REDAAT-IIER diagnose and research collaboration Achievements

IIER-ISCIII Madrid, March 2013 IIER-SEPAR agreement (RDR) Data exchange agreement: REDAAT New registries design and start-up: Pulmonary Langerhans cells hystiocitosis (PLCH) Lymphangioleoimiomatosis (LAM) Alveolar Proteinosis (AP) Idiopatic tracheal stenosis (ITS)

IIER-ISCIII Madrid, March 2013 Data exchange agreement (REDAAT) General information Registration form Real-time registered cases basal data Patient’s guide Expert pannel contacts Member of AIR

IIER-ISCIII Madrid, March 2013 New registries Advisory boards: aproved and working on

IIER-ISCIII Madrid, March 2013 Web page and database contents Selection of common items Definition of specific items Information for patients Basic demographic and clinical data Lung function test 6MWT GSA Follow-up items HRCT Biomarkers Genetic test General information about each disease Educational materials

IIER-ISCIII Madrid, March 2013 Web page and database contents

IIER-ISCIII Madrid, March 2013 Registries in SEPAR structure President COPD working group coordinator Scientific commite director LAM PLCH Alveolar proteinosis Sarcoidosis IDLD coordinator Thoracic surgery coordinator Idiopatic tracheal stenosis

IIER-ISCIII Madrid, March 2013 REDAAT-IIER diagnose and research collaboration: 80 samples/year

IIER-ISCIII Madrid, March 2013 Diagnoses of alpha-1-antitrypsin deficiency (AATD) by dried blood spot samples (DBS) Very rare AATD variants diagnose

IIER-ISCIII Madrid, March Star-up LAM registration Design and start-up ITS Start-up LAM, AP, PLCH, sarco Home webpage contents: patient’s information Performance of data exchange (update of REDAAT database) IIER Genetic Department support for AATD diagnose REDAAT-IIER: 2 published papers about rare variants of AATD Challenges Contents for home RRD webpage Patient’s association commitment New registries proposal?

IIER-ISCIII Madrid, March 2013 Aplicability on clinical practice Improvement of knowledge (acumulative experience) Experts network Diagnose support Research projects Treatments postsurveillance survey Natual history of the disease

IIER-ISCIII Madrid, March 2013 Gracias GRACIAS