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ERS Clinical Research Collaboration (CRC) European Alpha-1 Research Collaboration - EARCO
[Presenter Name]
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What is an ERS Clinical Research Collaboration (CRC)?
An umbrella for a network of researchers in a specific disease area Aims To promote the exchange of ideas among clinicians and scientists To plan, conduct and publish clinical trials To gain eligibility for network funding Output High-quality, patient-oriented research Patient and public input is crucial
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2017 ERS Clinical Research Collaboration (CRC) call
Aims To create the EARCO Registry To build a network of researchers and clinical experts in AATD To reach a consensus on the main research priorities To support and encourage early career researchers in the field of AATD To facilitate applications to industry and European Union funding sources To establish SOPs for AATD diagnosis
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EARCO Participating Countries
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EARCO Registry: Organisation
Steering committee: Alice Turner (UK) Gerry McElvaney (Ireland) Ilaria Ferrarotti (Italy) Jan Stolk (Netherlands) Joanna Chorostowska-Wynimko (Poland) Robert Stockley (UK) Karen O´Hara (UK), Marion Wilkens (Germany) Chairs: Timm Greulich (Germany) Marc Miravitlles (Spain) Members: Representatives from 24 countries
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EARCO Registry: Organisation
Members Latvia: Alvils Krams Austria: Karin Schmidt-Scherzer Malta: Caroline Gouder Belgium: Wim Jenssens Portugal: Maria Sucena Bulgaria: Yavor Ivanov Rumania: Ruxandra Ulmeanu, Ana Zaharie Croatia: Ana Hecomovic Serbia: Alexandra Dudvarski Czech: Jan Chlumsky Spain: Miriam Barrecheguren, Cristina Esquinas Denmark: Niels Seersholm Sweden: Hanan Tanash Estonia: Alan Altraja Switzerland: Malcolm Kohler, Christian Clarenbach France: Jean-François Mornex Turkey: Arzu Yorganzioglu Germany: Robert Bals, Sabina Janciauskiene Ukraine: Oleksandr Makulov Italy: Angelo Corsico, Luciano Corda UK: David Parr, Ravi Mahadeva, Beatriz Lara
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EARCO Registry: Organisation
Industry (sponsor) Grants EARCO Registry: Organisation Research Projects: 1. Standards in laboratory diagnosis of AATD 2. Survey on attitudes about indication of AAT therapy 3. Survey on unmet needs for HCP and patients 4. Development of the prospective international registry
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EARCO Registry: Objectives
To be launched first semester of 2019 To recruit 3,000 patients in the first 3 years To gather information from centers across Europe To integrate data with pre-existing national registries To facilitate the development of longitudinal studies To facilitate collaboration with other registries such as the liver-registry To attract new/young researchers and clinicians to the field of AATD
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EARCO Registry: Data Collection
Variables Sociodemographic DOB, sex, country, socioeconomic data, smoking status Clinical data BMI, comorbidities, respiratory diseases AATD related Date of diagnosis, AAT levels, genotype, related diseases Complementary tests Lung function, CT scan, liver (enzymes, fibro scan) Treatment COPD treatment, AAT therapy Symptoms and exacerbations Symptoms, CAT, SGRQ, exacerbations, hospital admissions Follow-up every 12 months Quality control (PDF upload for spirometry and blood tests)
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EARCO Registry: Data Collection
Direct access from the EARCO website Open to all physicians Linked to national registries to share data Economic incentive to ensure viability
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Do we need another AATD Registry ?
Yes, because… We need to increase physicians awareness of, and testing for, AATD Registries are necessary to gather large-scale data that clinical trials cannot A lack of standardisation of clinical outcomes between centres reduces the utility of the data collected by registries Patients should be treated in reference centres using the same SOPs across Europe EARCO is developing a new prospective follow-up registry, which will: Integrate all national registries Enhance long-term follow-up Facilitate research and quality improvement initiatives across healthcare systems
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EARCO Editorial
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Acknowledgements
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