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Rationale, design a...
Rationale, design and methodology of APPROACH-IS II: International study of patient-reported outcomes and frailty phenotyping in adults with congenital heart disease.
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- Van Bulck, Liesbet (author)
- KU Leuven - University of Leuven, Leuven, Belgium; Research Foundation Flanders (FWO), Brussels, Belgium,Univ Leuven, KU Leuven, Leuven, Belgium.;Res Fdn Flanders FWO, Brussels, Belgium.
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- Kovacs, Adrienne H (author)
- Oregon Health & Science University, OR, Portland, United States,Oregon Hlth & Sci Univ, Portland, OR 97201 USA.
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- Goossens, Eva (author)
- KU Leuven - University of Leuven, Leuven, Belgium; University of Antwerp, Antwerp, Belgium,Univ Leuven, KU Leuven, Leuven, Belgium.;Univ Antwerp, Antwerp, Belgium.
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show more...
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- Luyckx, Koen (author)
- KU Leuven - University of Leuven, Leuven, Belgium; UNIBS, University of the Free State, Bloemfontein, South Africa
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- Zaidi, Ali (author)
- Mount Sinai Heart, NY, New York, United States,Mt Sinai Heart, New York, NY USA.
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- Wang, Jou-Kou (author)
- National Taiwan University Hospital, Taipei City, Taiwan,Natl Taiwan Univ Hosp, Taipei, Taiwan.
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- Yadeta, Dejuma (author)
- Addis Ababa University, Addis Ababa, Ethiopia,Addis Ababa Univ, Addis Ababa, Ethiopia.
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- Windram, Jonathan (author)
- Mazankowski Alberta Heart Institute, Edmonton, Canada,Mazankowski Alberta Heart Inst, Edmonton, AB, Canada.
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- Van De Bruaene, Alexander (author)
- University Hospitals Leuven, Leuven, Belgium,Univ Hosp Leuven, Leuven, Belgium.
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- Thomet, Corina (author)
- Inselspital, Bern University Hospital, University of Bern, Switzerland,Univ Bern, Bern Univ Hosp, Inselspital, Bern, Switzerland.
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- Thambo, Jean-Benoît (author)
- Hôpital cardiologique Haut-Leveque, Bordeaux, France,Hop Cardiol Haut Leveque, Bordeaux, France.
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- Taunton, Marshall (author)
- Oregon Health & Science University, OR, Portland, United States,Oregon Hlth & Sci Univ, Portland, OR 97201 USA.
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- Sasikumar, Navaneetha (author)
- Amrita Institute of Medical Sciences, Kerala, Kochi, India,Amrita Inst Med Sci, Kochi, Kerala, India.
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- Sandberg, Camilla (author)
- Umeå universitet,Avdelningen för medicin,Umeå Univ, Umeå, Sweden.
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- Saidi, Arwa (author)
- University of Florida Health, FL, Gainesville, United States,Univ Florida Hlth, Gainesville, FL USA.
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- Rutz, Tobias (author)
- Lausanne University Hospital and University of Lausanne, Lausanne, Switzerland,Lausanne Univ Hosp, Lausanne, Switzerland.;Univ Lausanne, Lausanne, Switzerland.
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- Ortiz, Lucia (author)
- Hospital San Juan De Dios De La Plata, Buenos Aires, Argentina,Hosp San Juan De Dios La Plata, Buenos Aires, DF, Argentina.
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- Mwita, Julius Chacha (author)
- University of Botswana and Princess Marina Hospital, Gaborone, Botswana,Univ Botswana, Gaborone, Botswana.;Princess Marina Hosp, Gaborone, Botswana.
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- Moon, Ju Ryoung (author)
- Samsung Medical Center, Seoul, South Korea,Samsung Med Ctr, Seoul, South Korea.
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- Menahem, Samuel (author)
- Monash University, Melbourne, Australia,Monash Univ, Melbourne, Vic, Australia.
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- Mattsson, Eva (author)
- Karolinska Institutet, Stockholm, Sweden,Karolinska Inst, Stockholm, Sweden.
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- Mandalenakis, Zacharias, 1979 (author)
- Sahlgrenska University Hospital/Östra, Gothenburg, Sweden,Sahlgrens Univ Hosp, Gothenburg, Sweden.
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- Mahadevan, Vaikom S (author)
- University of California San Francisco (UCSF), CA, San Francisco, United States,Univ Calif San Francisco, San Francisco, CA 94143 USA.
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- Lykkeberg, Birgitte (author)
- Copenhagen University Hospital Rigshospitalet, Copenhagen, Denmark,Copenhagen Univ Hosp, Rigshosp, Copenhagen, Denmark.
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- Leye, Mohamed (author)
- University of Thiés, Thiés, Senegal,Univ Thies, Thies, Senegal.
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- Leong, Ming Chern (author)
- IJN (National Heart Institute), Kuala Lumpur, Malaysia,IJN Natl Heart Inst, Kuala Lumpur, Malaysia.
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- Ladouceur, Magalie (author)
- Hôpital Européen Georges Pompidou, AP-HP Paris, France
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- Ladak, Laila Akbar (author)
- Aga Khan University, Karachi, Pakistan,Aga Khan Univ, Karachi, Pakistan.
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- Kim, Yuli (author)
- Penn Medicine and Children's Hospital of Philadelphia, PA, Philadelphia, United States,Penn Med, Philadelphia, PA USA.;Childrens Hosp Philadelphia, Philadelphia, PA 19104 USA.
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- Khairy, Paul (author)
- Montreal Heart Institute, Université de Montréal, Montreal, Canada,Univ Montreal, Montreal Heart Inst, Montreal, PQ, Canada.
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- Kaneva, Anna (author)
- National Heart Hospital, Sofia, Bulgaria,Natl Heart Hosp, Sofia, Bulgaria.
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- Johansson, Bengt (author)
- Umeå universitet,Klinisk fysiologi,Umeå Univ, Umeå, Sweden.
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- Jackson, Jamie L (author)
- Nationwide Children's Hospital, OH, Columbus, United States,Nationwide Childrens Hosp, Columbus, OH USA.
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- Giannakoulas, George (author)
- AHEPA University Hospital, Aristotle University of Thessaloniki, Greece,Aristotle Univ Thessaloniki, AHEPA Univ Hosp, Thessaloniki, Greece.
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- Gabriel, Harald (author)
- Medical University of Vienna, Vienna, Austria,Med Univ Vienna, Vienna, Austria.
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- Fernandes, Susan M (author)
- Lucile Packard Children's Hospital and Stanford Health Care, CA, Stanford, United States,Lucile Packard Childrens Hosp, Stanford, CA USA.;Stanford Hlth Care, Stanford, CA USA.
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- Enomoto, Junko (author)
- Chiba Cerebral and Cardiovascular Center, Chiba, Japan; Toyo University, Tokyo, Japan,Chiba Cerebral & Cardiovasc Ctr, Chiba, Japan.;Toyo Univ, Tokyo, Japan.
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- Demir, Fatma (author)
- Ege University Health Application and Research Center, Bornova/İZMİR, Turkey,Ege Univ, Hlth Applicat & Res Ctr, Bornova, Turkey.
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- de Hosson, Michèle (author)
- Ghent University Hospital, Ghent, Belgium,Ghent Univ Hosp, Ghent, Belgium.
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- Constantine, Andrew (author)
- Royal Brompton Hospital, Royal Brompton & Harefield Hospitals, Guy's and St Thomas' NHS Foundation Trust, London, United Kingdom,Guys & St Thomas NHS Fdn Trust, Royal Brompton & Harefield Hosp, Royal Brompton Hosp, London, England.
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- Coats, Louise (author)
- Population Health Sciences Institute, Newcastle University, Newcastle upon Tyne, United Kingdom,Newcastle Univ, Populat Hlth Sci Inst, Newcastle Upon Tyne, Tyne & Wear, England.
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- Christersson, Christina (author)
- Uppsala universitet,Uppsala kliniska forskningscentrum (UCR),Kardiologi,Koagulation och inflammationsvetenskap
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- Cedars, Ari (author)
- University of Southwestern Medical Center, TX, Dallas, United States; Johns Hopkins Hospital, MD, Baltimore, United States,Univ Southwestern Med Ctr, Dallas, TX USA.;Johns Hopkins Univ Hosp, Baltimore, MD 21287 USA.
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- Caruana, Maryanne (author)
- Mater Dei Hospital, L-Imsida, Malta,Mater Dei Hosp, L Imsida, Malta.
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- Callus, Edward (author)
- IRCCS Policlinico San Donato, San Donato Milanese, Milan, Italy; University of Milan, Milan, Italy,IRCCS Policlin San Donato, Milan, Italy.;Univ Milan, Milan, Italy.
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- Brainard, Sarah (author)
- Boston Children's Hospital, Brigham and Women's Hospital, Harvard Medical School, MA, Boston, United States,Harvard Med Sch, Brigham & Womens Hosp, Boston Childrens Hosp, Boston, MA 02115 USA.
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- Bouchardy, Judith (author)
- Lausanne University Hospital and University of Lausanne, Lausanne, Switzerland; Hôpitaux Universitaires de Genève, Genève, Switzerland,Lausanne Univ Hosp, Lausanne, Switzerland.;Univ Lausanne, Lausanne, Switzerland.;Hop Univ Geneve, Geneva, Switzerland.
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- Boer, Anna (author)
- University Medical Center Groningen, Groningen, Netherlands,Univ Med Ctr Groningen, Groningen, Netherlands.
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- Baraona Reyes, Fernando (author)
- Pontificia Universidad Católica de Chile and Instituto Nacional Del Torax, Santiago, Chile,Pontificia Univ Catolica Chile, Santiago, Chile.;Inst Nacl Torax, Santiago, Chile.
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- Areias, Maria Emília (author)
- UnIC@RISE, University of Porto, Porto, Portugal; Centro Hospitalar Universitário de S. João, Porto, Portugal,Univ Porto, UnIC RISE, Porto, Portugal.;Ctr Hosp Univ S Joao, Porto, Portugal.
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- Araujo, John Jairo (author)
- Meintegral-Clinic, Manizales, Colombia
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- Andresen, Brith (author)
- Oslo University Hospital, Rikshospitalet, Oslo, Norway,Oslo Univ Hosp, Rikshosp, Oslo, Norway.
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- Amedro, Pascal (author)
- Hôpital cardiologique Haut-Leveque, Bordeaux, France; Montpellier University Hospital, Montpellier, France,Hop Cardiol Haut Leveque, Bordeaux, France.;Montpellier Univ Hosp, Montpellier, France.
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- Ambassa, Jean-Claude (author)
- Clinique Medical Le Jourdain, Yaoundé, Cameroon,Clin Med Le Jourdain, Yaounde, Cameroon.
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- Amaral, Fernando (author)
- University Hospital, Ribeirão Preto Medical School, Brazil,Univ Hosp, Ribeirao Preto Med Sch, Ribeirao Preto, Brazil.
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- Alday, Luis (author)
- Hospital de Niños, Cordoba, Argentina,Hosp Ninos, Cordoba, Argentina.
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- Moons, Philip, 1968 (author)
- Gothenburg University,Göteborgs universitet,Institutionen för vårdvetenskap och hälsa,Institute of Health and Care Sciences,KU Leuven - University of Leuven, Leuven, Belgium; University of Gothenburg, Gothenburg, Sweden; University of Cape Town, Cape Town, South Africa,Univ Leuven, KU Leuven, Leuven, Belgium.;Univ Gothenburg, Gothenburg, Sweden.;Univ Cape Town, Cape Town, South Africa.
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KU Leuven - University of Leuven, Leuven, Belgium; Research Foundation Flanders (FWO), Brussels, Belgium Univ Leuven, KU Leuven, Leuven, Belgium;Res Fdn Flanders FWO, Brussels, Belgium. (creator_code:org_t)
- Elsevier BV, 2022
- 2022
- English.
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In: International journal of cardiology. - : Elsevier BV. - 1874-1754 .- 0167-5273. ; 363, s. 30-39
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Abstract
Subject headings
Close
- In recent years, patient-reported outcomes (PROs) have received increasing prominence in cardiovascular research and clinical care. An understanding of the variability and global experience of PROs in adults with congenital heart disease (CHD), however, is still lacking. Moreover, information on epidemiological characteristics and the frailty phenotype of older adults with CHD is minimal. The APPROACH-IS II study was established to address these knowledge gaps. This paper presents the design and methodology of APPROACH-IS II.APPROACH-IS II is a cross-sectional global multicentric study that includes Part 1 (assessing PROs) and Part 2 (investigating the frailty phenotype of older adults). With 53 participating centers, located in 32 countries across six continents, the aim is to enroll 8000 patients with CHD. In Part 1, self-report surveys are used to collect data on PROs (e.g., quality of life, perceived health, depressive symptoms, autonomy support), and explanatory variables (e.g., social support, stigma, illness identity, empowerment). In Part 2, the cognitive functioning and frailty phenotype of older adults are measured using validated assessments.APPROACH-IS II will generate a rich dataset representing the international experience of individuals in adult CHD care. The results of this project will provide a global view of PROs and the frailty phenotype of adults with CHD and will thereby address important knowledge gaps. Undoubtedly, the project will contribute to the overarching aim of improving optimal living and care provision for adults with CHD.
Subject headings
- MEDICIN OCH HÄLSOVETENSKAP -- Hälsovetenskap (hsv//swe)
- MEDICAL AND HEALTH SCIENCES -- Health Sciences (hsv//eng)
- MEDICIN OCH HÄLSOVETENSKAP -- Klinisk medicin -- Kardiologi (hsv//swe)
- MEDICAL AND HEALTH SCIENCES -- Clinical Medicine -- Cardiac and Cardiovascular Systems (hsv//eng)
Keyword
- Cross-Sectional Studies
- Frailty
- diagnosis
- epidemiology
- Heart Defects
- Congenital
- diagnosis
- epidemiology
- psychology
- Humans
- Patient Reported Outcome Measures
- Quality of Life
- Congenital heart disease
- Clinical Physiology
Publication and Content Type
- ref (subject category)
- art (subject category)
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Van Bulck, Liesb ...
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Kovacs, Adrienne ...
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Goossens, Eva
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Luyckx, Koen
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Zaidi, Ali
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Wang, Jou-Kou
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Yadeta, Dejuma
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Windram, Jonatha ...
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Van De Bruaene, ...
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Thomet, Corina
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Thambo, Jean-Ben ...
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Taunton, Marshal ...
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Sasikumar, Navan ...
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Sandberg, Camill ...
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Saidi, Arwa
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Rutz, Tobias
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Ortiz, Lucia
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Mwita, Julius Ch ...
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Moon, Ju Ryoung
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Menahem, Samuel
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Mattsson, Eva
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Mandalenakis, Za ...
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Mahadevan, Vaiko ...
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Lykkeberg, Birgi ...
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Leye, Mohamed
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Leong, Ming Cher ...
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Ladouceur, Magal ...
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Ladak, Laila Akb ...
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Kim, Yuli
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Khairy, Paul
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Kaneva, Anna
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Johansson, Bengt
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Jackson, Jamie L
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Giannakoulas, Ge ...
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Gabriel, Harald
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Fernandes, Susan ...
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Enomoto, Junko
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Demir, Fatma
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de Hosson, Michè ...
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Constantine, And ...
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Coats, Louise
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Christersson, Ch ...
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Cedars, Ari
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Caruana, Maryann ...
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Callus, Edward
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Brainard, Sarah
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Bouchardy, Judit ...
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Boer, Anna
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Baraona Reyes, F ...
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Areias, Maria Em ...
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Araujo, John Jai ...
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Andresen, Brith
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Amedro, Pascal
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Ambassa, Jean-Cl ...
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Amaral, Fernando
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Alday, Luis
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Moons, Philip, 1 ...
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- MEDICAL AND HEALTH SCIENCES
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MEDICAL AND HEAL ...
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and Health Sciences
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- MEDICAL AND HEALTH SCIENCES
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MEDICAL AND HEAL ...
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and Clinical Medicin ...
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and Cardiac and Card ...
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University of Gothenburg
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Umeå University
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Karolinska Institutet
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Uppsala University