Achieving Thoracic Oncology data collection in Europe: a precursor study in 35 Countries

Anna Rich, David Baldwin, Inmaculada Alfageme, Paul Beckett, Thierry Berghmans, Stephen Brincat, Otto Burghuber, Alexandru Corlateanu, Tanja Cufer, Ronald Damhuis, Edvardas Danila, Joanna Domagala-Kulawik, Stefano Elia, Mina Gaga, Tuncay Goksel, Bogdan Grigoriu, Gunnar Hillerdal, Rudolf Maria Huber, Erik Jakobsen, Steinn JonssonDragana Jovanovic, Elena Kavcova, Assia Konsoulova, Tanel Laisaar, Riitta Makitaro, Bakir Mehic, Robert Milroy, Judit Moldvay, Ross Morgan, Milda Nanushi, Marianne Paesmans, Paul Martin Putora, Miroslav Samarzija, Arnaud Scherpereel, Marc Schlesser, Jean-Paul Sculier, Jana Skrickova, Renato Sotto-Mayor, Trond-Eirik Strand, Paul Van Schil, Torsten-Gerriet Blum

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Resumé

BACKGROUND: A minority of European countries have participated in international comparisons with high level data on lung cancer. However, the nature and extent of data collection across the continent is simply unknown, and without accurate data collection it is not possible to compare practice and set benchmarks to which lung cancer services can aspire.

METHODS: Using an established network of lung cancer specialists in 37 European countries, a survey was distributed in December 2014. The results relate to current practice in each country at the time, early 2015. The results were compiled and then verified with co-authors over the following months.

RESULTS: Thirty-five completed surveys were received which describe a range of current practice for lung cancer data collection. Thirty countries have data collection at the national level, but this is not so in Albania, Bosnia-Herzegovina, Italy, Spain and Switzerland. Data collection varied from paper records with no survival analysis, to well-established electronic databases with links to census data and survival analyses.

CONCLUSION: Using a network of committed clinicians, we have gathered validated comparative data reporting an observed difference in data collection mechanisms across Europe. We have identified the need to develop a well-designed dataset, whilst acknowledging what is feasible within each country, and aspiring to collect high quality data for clinical research.

OriginalsprogEngelsk
Artikelnummer1144
TidsskriftBMC Cancer
Vol/bind18
Antal sider12
ISSN1471-2407
DOI
StatusUdgivet - 20. nov. 2018

Fingeraftryk

Survival Analysis
Albania
Bosnia and Herzegovina
Benchmarking
Censuses
Italy
Research Design
Databases
Research
Surveys and Questionnaires
Data Accuracy
Datasets

Citer dette

Rich, A., Baldwin, D., Alfageme, I., Beckett, P., Berghmans, T., Brincat, S., ... Blum, T-G. (2018). Achieving Thoracic Oncology data collection in Europe: a precursor study in 35 Countries. BMC Cancer, 18, [1144]. https://doi.org/10.1186/s12885-018-5009-y
Rich, Anna ; Baldwin, David ; Alfageme, Inmaculada ; Beckett, Paul ; Berghmans, Thierry ; Brincat, Stephen ; Burghuber, Otto ; Corlateanu, Alexandru ; Cufer, Tanja ; Damhuis, Ronald ; Danila, Edvardas ; Domagala-Kulawik, Joanna ; Elia, Stefano ; Gaga, Mina ; Goksel, Tuncay ; Grigoriu, Bogdan ; Hillerdal, Gunnar ; Huber, Rudolf Maria ; Jakobsen, Erik ; Jonsson, Steinn ; Jovanovic, Dragana ; Kavcova, Elena ; Konsoulova, Assia ; Laisaar, Tanel ; Makitaro, Riitta ; Mehic, Bakir ; Milroy, Robert ; Moldvay, Judit ; Morgan, Ross ; Nanushi, Milda ; Paesmans, Marianne ; Putora, Paul Martin ; Samarzija, Miroslav ; Scherpereel, Arnaud ; Schlesser, Marc ; Sculier, Jean-Paul ; Skrickova, Jana ; Sotto-Mayor, Renato ; Strand, Trond-Eirik ; Van Schil, Paul ; Blum, Torsten-Gerriet. / Achieving Thoracic Oncology data collection in Europe : a precursor study in 35 Countries. I: BMC Cancer. 2018 ; Bind 18.
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title = "Achieving Thoracic Oncology data collection in Europe: a precursor study in 35 Countries",
abstract = "BACKGROUND: A minority of European countries have participated in international comparisons with high level data on lung cancer. However, the nature and extent of data collection across the continent is simply unknown, and without accurate data collection it is not possible to compare practice and set benchmarks to which lung cancer services can aspire.METHODS: Using an established network of lung cancer specialists in 37 European countries, a survey was distributed in December 2014. The results relate to current practice in each country at the time, early 2015. The results were compiled and then verified with co-authors over the following months.RESULTS: Thirty-five completed surveys were received which describe a range of current practice for lung cancer data collection. Thirty countries have data collection at the national level, but this is not so in Albania, Bosnia-Herzegovina, Italy, Spain and Switzerland. Data collection varied from paper records with no survival analysis, to well-established electronic databases with links to census data and survival analyses.CONCLUSION: Using a network of committed clinicians, we have gathered validated comparative data reporting an observed difference in data collection mechanisms across Europe. We have identified the need to develop a well-designed dataset, whilst acknowledging what is feasible within each country, and aspiring to collect high quality data for clinical research.",
keywords = "Audit, Data collection, Datasets, Epidemiology, Lung Cancer",
author = "Anna Rich and David Baldwin and Inmaculada Alfageme and Paul Beckett and Thierry Berghmans and Stephen Brincat and Otto Burghuber and Alexandru Corlateanu and Tanja Cufer and Ronald Damhuis and Edvardas Danila and Joanna Domagala-Kulawik and Stefano Elia and Mina Gaga and Tuncay Goksel and Bogdan Grigoriu and Gunnar Hillerdal and Huber, {Rudolf Maria} and Erik Jakobsen and Steinn Jonsson and Dragana Jovanovic and Elena Kavcova and Assia Konsoulova and Tanel Laisaar and Riitta Makitaro and Bakir Mehic and Robert Milroy and Judit Moldvay and Ross Morgan and Milda Nanushi and Marianne Paesmans and Putora, {Paul Martin} and Miroslav Samarzija and Arnaud Scherpereel and Marc Schlesser and Jean-Paul Sculier and Jana Skrickova and Renato Sotto-Mayor and Trond-Eirik Strand and {Van Schil}, Paul and Torsten-Gerriet Blum",
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volume = "18",
journal = "B M C Cancer",
issn = "1471-2407",
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Rich, A, Baldwin, D, Alfageme, I, Beckett, P, Berghmans, T, Brincat, S, Burghuber, O, Corlateanu, A, Cufer, T, Damhuis, R, Danila, E, Domagala-Kulawik, J, Elia, S, Gaga, M, Goksel, T, Grigoriu, B, Hillerdal, G, Huber, RM, Jakobsen, E, Jonsson, S, Jovanovic, D, Kavcova, E, Konsoulova, A, Laisaar, T, Makitaro, R, Mehic, B, Milroy, R, Moldvay, J, Morgan, R, Nanushi, M, Paesmans, M, Putora, PM, Samarzija, M, Scherpereel, A, Schlesser, M, Sculier, J-P, Skrickova, J, Sotto-Mayor, R, Strand, T-E, Van Schil, P & Blum, T-G 2018, 'Achieving Thoracic Oncology data collection in Europe: a precursor study in 35 Countries', BMC Cancer, bind 18, 1144. https://doi.org/10.1186/s12885-018-5009-y

Achieving Thoracic Oncology data collection in Europe : a precursor study in 35 Countries. / Rich, Anna; Baldwin, David; Alfageme, Inmaculada; Beckett, Paul; Berghmans, Thierry; Brincat, Stephen; Burghuber, Otto; Corlateanu, Alexandru; Cufer, Tanja; Damhuis, Ronald; Danila, Edvardas; Domagala-Kulawik, Joanna; Elia, Stefano; Gaga, Mina; Goksel, Tuncay; Grigoriu, Bogdan; Hillerdal, Gunnar; Huber, Rudolf Maria; Jakobsen, Erik; Jonsson, Steinn; Jovanovic, Dragana; Kavcova, Elena; Konsoulova, Assia; Laisaar, Tanel; Makitaro, Riitta; Mehic, Bakir; Milroy, Robert; Moldvay, Judit; Morgan, Ross; Nanushi, Milda; Paesmans, Marianne; Putora, Paul Martin; Samarzija, Miroslav; Scherpereel, Arnaud; Schlesser, Marc; Sculier, Jean-Paul; Skrickova, Jana; Sotto-Mayor, Renato; Strand, Trond-Eirik; Van Schil, Paul; Blum, Torsten-Gerriet.

I: BMC Cancer, Bind 18, 1144, 20.11.2018.

Publikation: Bidrag til tidsskriftTidsskriftartikelForskningpeer review

TY - JOUR

T1 - Achieving Thoracic Oncology data collection in Europe

T2 - a precursor study in 35 Countries

AU - Rich, Anna

AU - Baldwin, David

AU - Alfageme, Inmaculada

AU - Beckett, Paul

AU - Berghmans, Thierry

AU - Brincat, Stephen

AU - Burghuber, Otto

AU - Corlateanu, Alexandru

AU - Cufer, Tanja

AU - Damhuis, Ronald

AU - Danila, Edvardas

AU - Domagala-Kulawik, Joanna

AU - Elia, Stefano

AU - Gaga, Mina

AU - Goksel, Tuncay

AU - Grigoriu, Bogdan

AU - Hillerdal, Gunnar

AU - Huber, Rudolf Maria

AU - Jakobsen, Erik

AU - Jonsson, Steinn

AU - Jovanovic, Dragana

AU - Kavcova, Elena

AU - Konsoulova, Assia

AU - Laisaar, Tanel

AU - Makitaro, Riitta

AU - Mehic, Bakir

AU - Milroy, Robert

AU - Moldvay, Judit

AU - Morgan, Ross

AU - Nanushi, Milda

AU - Paesmans, Marianne

AU - Putora, Paul Martin

AU - Samarzija, Miroslav

AU - Scherpereel, Arnaud

AU - Schlesser, Marc

AU - Sculier, Jean-Paul

AU - Skrickova, Jana

AU - Sotto-Mayor, Renato

AU - Strand, Trond-Eirik

AU - Van Schil, Paul

AU - Blum, Torsten-Gerriet

PY - 2018/11/20

Y1 - 2018/11/20

N2 - BACKGROUND: A minority of European countries have participated in international comparisons with high level data on lung cancer. However, the nature and extent of data collection across the continent is simply unknown, and without accurate data collection it is not possible to compare practice and set benchmarks to which lung cancer services can aspire.METHODS: Using an established network of lung cancer specialists in 37 European countries, a survey was distributed in December 2014. The results relate to current practice in each country at the time, early 2015. The results were compiled and then verified with co-authors over the following months.RESULTS: Thirty-five completed surveys were received which describe a range of current practice for lung cancer data collection. Thirty countries have data collection at the national level, but this is not so in Albania, Bosnia-Herzegovina, Italy, Spain and Switzerland. Data collection varied from paper records with no survival analysis, to well-established electronic databases with links to census data and survival analyses.CONCLUSION: Using a network of committed clinicians, we have gathered validated comparative data reporting an observed difference in data collection mechanisms across Europe. We have identified the need to develop a well-designed dataset, whilst acknowledging what is feasible within each country, and aspiring to collect high quality data for clinical research.

AB - BACKGROUND: A minority of European countries have participated in international comparisons with high level data on lung cancer. However, the nature and extent of data collection across the continent is simply unknown, and without accurate data collection it is not possible to compare practice and set benchmarks to which lung cancer services can aspire.METHODS: Using an established network of lung cancer specialists in 37 European countries, a survey was distributed in December 2014. The results relate to current practice in each country at the time, early 2015. The results were compiled and then verified with co-authors over the following months.RESULTS: Thirty-five completed surveys were received which describe a range of current practice for lung cancer data collection. Thirty countries have data collection at the national level, but this is not so in Albania, Bosnia-Herzegovina, Italy, Spain and Switzerland. Data collection varied from paper records with no survival analysis, to well-established electronic databases with links to census data and survival analyses.CONCLUSION: Using a network of committed clinicians, we have gathered validated comparative data reporting an observed difference in data collection mechanisms across Europe. We have identified the need to develop a well-designed dataset, whilst acknowledging what is feasible within each country, and aspiring to collect high quality data for clinical research.

KW - Audit

KW - Data collection

KW - Datasets

KW - Epidemiology

KW - Lung Cancer

U2 - 10.1186/s12885-018-5009-y

DO - 10.1186/s12885-018-5009-y

M3 - Journal article

C2 - 30458807

VL - 18

JO - B M C Cancer

JF - B M C Cancer

SN - 1471-2407

M1 - 1144

ER -

Rich A, Baldwin D, Alfageme I, Beckett P, Berghmans T, Brincat S et al. Achieving Thoracic Oncology data collection in Europe: a precursor study in 35 Countries. BMC Cancer. 2018 nov 20;18. 1144. https://doi.org/10.1186/s12885-018-5009-y