1. ERS Clinical Research Collaboration (CRC) European Alpha-1 Research Collaboration - EARCO
[Presenter Name]

2. 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

3. 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

4. EARCO Participating Countries

5. 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

6. 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

7. 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

8. 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

9. 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)

10. 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

11. 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

12. EARCO Editorial

13. Acknowledgements