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Article ; Online: Study design and rationale of the pAtients pResenTing with cOngenital heaRt dIseAse Register (ARTORIA-R).

Sinning, Christoph / Zengin, Elvin / Diller, Gerhard-Paul / Onorati, Francesco / Castel, María-Angeles / Petit, Thibault / Chen, Yih-Sharng / Lo Rito, Mauro / Chiarello, Carmelina / Guillemain, Romain / Coniat, Karine Nubret-Le / Magnussen, Christina / Knappe, Dorit / Becher, Peter Moritz / Schrage, Benedikt / Smits, Jacqueline M / Metzner, Andreas / Knosalla, Christoph / Schoenrath, Felix /

Miera, Oliver / Cho, Mi-Young / Bernhardt, Alexander / Weimann, Jessica / Goßling, Alina / Terzi, Amedeo / Amodeo, Antonio / Alfieri, Sara / Angeli, Emanuela / Ragni, Luca / Napoleone, Carlo Pace / Gerosa, Gino / Pradegan, Nicola / Rodrigus, Inez / Dumfarth, Julia / de Pauw, Michel / François, Katrien / Van Caenegem, Olivier / Ancion, Arnaut / Van Cleemput, Johan / Miličić, Davor / Moza, Ajay / Schenker, Peter / Thul, Josef / Steinmetz, Michael / Warnecke, Gregor / Ius, Fabio / Freyt, Susanne / Avsar, Murat / Sandhaus, Tim / Haneya, Assad / Eifert, Sandra / Saeed, Diyar / Borger, Michael / Welp, Henryk / Ablonczy, László / Schmack, Bastian / Ruhparwar, Arjang / Naito, Shiho / Hua, Xiaoqin / Fluschnik, Nina / Nies, Moritz / Keil, Laura / Senftinger, Juliana / Ismaili, Djemail / Kany, Shinwan / Csengeri, Dora / Cardillo, Massimo / Oliveti, Alessandra / Faggian, Giuseppe / Dorent, Richard / Jasseron, Carine / Blanco, Alicia Pérez / Márquez, José Manuel Sobrino / López-Vilella, Raquel / García-Álvarez, Ana / López, María Luz Polo / Rocafort, Alvaro Gonzalez / Fernández, Óscar González / Prieto-Arevalo, Raquel / Zatarain-Nicolás, Eduardo / Blanchart, Katrien / Boignard, Aude / Battistella, Pascal / Guendouz, Soulef / Houyel, Lucile / Para, Marylou / Flecher, Erwan / Gay, Arnaud / Épailly, Éric / Dambrin, Camille / Lam, Kaitlyn / Ka-Lai, Cally Ho / Cho, Yang Hyun / Choi, Jin-Oh / Kim, Jae-Joong / Coats, Louise / Crossland, David Steven / Mumford, Lisa / Hakmi, Samer / Sivathasan, Cumaraswamy / Fabritz, Larissa / Schubert, Stephan / Gummert, Jan / Hübler, Michael / Jacksch, Peter / Zuckermann, Andreas / Laufer, Günther / Baumgartner, Helmut / Giamberti, Alessandro / Reichenspurner, Hermann / Kirchhof, Paulus

ESC heart failure

2021 Volume 8, Issue 6, Page(s) 5542–5550

Abstract: ... R) will collect data from ACHD evaluated or listed for heart or heart-combined organ transplantation ... for listing of the patients or assessing current HF treatment.: Conclusion: The ARTORIA-R will provide ...

Abstract	Aim: Due to improved therapy in childhood, many patients with congenital heart disease reach adulthood and are termed adults with congenital heart disease (ACHD). ACHD often develop heart failure (HF) as a consequence of initial palliative surgery or complex anatomy and subsequently require advanced HF therapy. ACHD are usually excluded from trials evaluating heart failure therapies, and in this context, more data about heart failure trajectories in ACHD are needed to guide the management of ACHD suffering from HF. Methods and results: The pAtients pResenTing with cOngenital heaRt dIseAse Register (ARTORIA-R) will collect data from ACHD evaluated or listed for heart or heart-combined organ transplantation from 16 countries in Europe and the Asia/Pacific region. We plan retrospective collection of data from 1989-2020 and will include patients prospectively. Additional organizations and hospitals in charge of transplantation of ACHD will be asked in the future to contribute data to the register. The primary outcome is the combined endpoint of delisting due to clinical worsening or death on the waiting list. The secondary outcome is delisting due to clinical improvement while on the waiting list. All-cause mortality following transplantation will also be assessed. The data will be entered into an electronic database with access to the investigators participating in the register. All variables of the register reflect key components important for listing of the patients or assessing current HF treatment. Conclusion: The ARTORIA-R will provide robust information on current management and outcomes of adults with congenital heart disease suffering from advanced heart failure.
MeSH term(s)	Adult ; Heart Defects, Congenital/complications ; Heart Defects, Congenital/epidemiology ; Heart Defects, Congenital/therapy ; Heart Failure/epidemiology ; Heart Failure/etiology ; Heart Failure/therapy ; Heart Transplantation/adverse effects ; Humans ; Retrospective Studies ; Waiting Lists
Language	English
Publishing date	2021-09-12
Publishing country	England
Document type	Journal Article
ZDB-ID	2814355-3
ISSN	2055-5822 ; 2055-5822
ISSN (online)	2055-5822
ISSN	2055-5822
DOI	10.1002/ehf2.13574
Database	MEDical Literature Analysis and Retrieval System OnLINE

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Article ; Online: Health-related Quality of Life in Alpha-1 Antitrypsin Deficiency-associated Chronic Obstructive Pulmonary Disease.

Choate, Radmila / Holm, Kristen E / Sandhaus, Robert A / Mannino, David M / Strange, Charlie

American journal of respiratory and critical care medicine

2024 Volume 208, Issue 10, Page(s) 1132–1134

MeSH term(s)	Humans ; Quality of Life ; Pulmonary Disease, Chronic Obstructive ; alpha 1-Antitrypsin Deficiency/complications ; alpha 1-Antitrypsin ; Pulmonary Emphysema/complications
Chemical Substances	alpha 1-Antitrypsin
Language	English
Publishing date	2024-01-18
Publishing country	United States
Document type	Letter
ZDB-ID	1180953-x
ISSN	1535-4970 ; 0003-0805 ; 1073-449X
ISSN (online)	1535-4970
ISSN	0003-0805 ; 1073-449X
DOI	10.1164/rccm.202304-0697LE
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Article ; Online: Characteristics associated with SF-36 in alpha-1 antitrypsin deficiency-associated COPD: a cross-sectional analysis.

Choate, Radmila / Holm, Kristen E / Sandhaus, Robert A / Mannino, David M / Strange, Charlie

BMC pulmonary medicine

2024 Volume 24, Issue 1, Page(s) 138

Abstract: Background: Generic measures of health-related quality of life (HRQoL), such as the 36-Item Short Form Survey (SF-36), are widely used in assessing chronic conditions. These tools have an advantage over disease-specific instruments, as they allow ... ...

Abstract	Background: Generic measures of health-related quality of life (HRQoL), such as the 36-Item Short Form Survey (SF-36), are widely used in assessing chronic conditions. These tools have an advantage over disease-specific instruments, as they allow comparisons across different health conditions and with the general population. In alpha-1 antitrypsin deficiency (AATD)-associated chronic obstructive pulmonary disease (COPD), HRQoL research remains scarce. This cross-sectional study evaluates the factors associated with HRQoL in a cohort of patients with AATD-associated COPD. Methods: Our study included participants of AlphaNet (2008-2019), a health management organization for people with AATD in the US who are prescribed augmentation therapy. Norm-based SF-36 scores for the mental and physical component summary scores (MCS and PCS, mean of 50 ± 10 in the general US population) and 8 individual scales were evaluated. Individuals with lung disease and data available on ≥1 measurement on any SF-36 scale and clinically relevant characteristics such as modified Medical Research Council (mMRC) scale, exacerbation frequency, productive cough, and use of oxygen were included in these analyses. Generalized linear regression models were fit to examine the association of baseline characteristics with MCS and PCS scores. Age, sex, regular use of oxygen, exacerbation frequency, mMRC, and productive cough were included in these models. Results: Participants (n=4398, mean age 57.6 [SD=10.6] years, 45.4% female) had a mean MCS score of 51.2 ± 10.8 and PCS of 36.3 ± 9.8. The average mMRC score was 2.4 ± 1.3, and 56.4% had 2 or more exacerbations per year. Overall, the physical component of SF-36 was more severely impacted compared to the mental component. In multivariable regression analyses, PCS scores were significantly associated with exacerbation frequency, mMRC, regular use of oxygen, and productive cough; MCS was associated with age, sex, exacerbation frequency, mMRC, and productive cough. Conclusions: These findings demonstrate that patient-perceived physical health is significantly impaired in this cohort of people with AATD-associated COPD compared to mental health. Longitudinal studies are needed to evaluate the change in physical and mental health status over time in this population.
MeSH term(s)	Female ; Humans ; Male ; Middle Aged ; alpha 1-Antitrypsin Deficiency/complications ; Cough ; Cross-Sectional Studies ; Oxygen ; Pulmonary Disease, Chronic Obstructive ; Quality of Life ; Aged
Chemical Substances	Oxygen (S88TT14065)
Language	English
Publishing date	2024-03-18
Publishing country	England
Document type	Journal Article
ZDB-ID	2059871-3
ISSN	1471-2466 ; 1471-2466
ISSN (online)	1471-2466
ISSN	1471-2466
DOI	10.1186/s12890-024-02953-7
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Article ; Online: Long-Term SGRQ Stability in a Cohort of Individuals with Alpha-1 Antitrypsin Deficiency-Associated Lung Disease.

Choate, Radmila / Holm, Kristen E / Sandhaus, Robert A / Mannino, David M / Strange, Charlie

International journal of chronic obstructive pulmonary disease

2024 Volume 19, Page(s) 889–900

Abstract: Background: Health-related quality of life (HRQoL) assessments such as St. George's Respiratory Questionnaire (SGRQ) are often used as outcome measures to evaluate patient-perceived changes in health status among individuals with lung disease. Several ... ...

Abstract	Background: Health-related quality of life (HRQoL) assessments such as St. George's Respiratory Questionnaire (SGRQ) are often used as outcome measures to evaluate patient-perceived changes in health status among individuals with lung disease. Several factors have been linked to deterioration in SGRQ, including symptoms (dyspnea, wheezing) and exercise intolerance. Whether these findings apply to individuals with alpha-1 antitrypsin deficiency (AATD) remains incompletely studied. This longitudinal study examines the trajectory of SGRQ scores in a cohort of United States individuals with AATD-associated lung disease and defines factors associated with longitudinal change. Methods: Individuals with AATD-associated lung disease enrolled in AlphaNet, a disease management program, who had ≥3 SGRQ measurements collected between 2009 and 2019, and baseline data for clinically important variables were included in these analyses. Data collected after lung transplants were excluded. Mixed-effects model analyses were used to evaluate the changes in SGRQ total and subscale scores over time and by modified Medical Research Council (mMRC) Scale, use of oxygen, age, sex, productive cough, and exacerbation frequency at baseline. Sensitivity analyses were conducted to examine the potential effect of survivor bias. Results: Participants (n=2456, mean age 57.1±9.9 years, 47% female) had a mean SGRQ total score of 44.7±18.9 at baseline, 48% used oxygen regularly, and 55% had ≥2 exacerbations per year. The median length of follow-up was 6 (IQR 3-9) years. The SGRQ total score and subscales remained stable throughout the observation period. Age, mMRC categories, presence or absence of productive cough, frequency of exacerbations, and use of oxygen at baseline were significantly associated with the rate of change of SGRQ total (p<0.0001). Conclusion: We observed long-term stability in HRQoL and an association between the rate of change in SGRQ and baseline mMRC, exacerbation frequency, productive cough, and use of oxygen in this cohort of individuals with AATD-associated lung disease.
MeSH term(s)	Female ; Humans ; Middle Aged ; Aged ; Male ; Longitudinal Studies ; Quality of Life ; Pulmonary Disease, Chronic Obstructive ; alpha 1-Antitrypsin Deficiency/complications ; alpha 1-Antitrypsin Deficiency/diagnosis ; Malnutrition ; Oxygen ; Lung ; Cough
Chemical Substances	Oxygen (S88TT14065)
Language	English
Publishing date	2024-04-10
Publishing country	New Zealand
Document type	Journal Article
ZDB-ID	2212419-6
ISSN	1178-2005 ; 1176-9106
ISSN (online)	1178-2005
ISSN	1176-9106
DOI	10.2147/COPD.S443183
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Article ; Online: Prevalence of Cardiovascular Disease and Rate of Major Adverse Cardiovascular Events in Severe Alpha-1 Antitrypsin Deficiency COPD.

Ellis, Paul / Bailey, Emily / Choate, Radmila / Holm, Kristen E / Sandhaus, Robert A / Turner, Alice M / Newnham, Michael

International journal of chronic obstructive pulmonary disease

2024 Volume 19, Page(s) 149–159

Abstract: Aim: Alpha-1 antitrypsin deficiency is an autosomal co-dominant condition that predisposes individuals to early-onset emphysema. As with COPD, AATD-COPD is associated with pulmonary exacerbations, which impacts on overall mortality and quality of life. ... ...

Abstract	Aim: Alpha-1 antitrypsin deficiency is an autosomal co-dominant condition that predisposes individuals to early-onset emphysema. As with COPD, AATD-COPD is associated with pulmonary exacerbations, which impacts on overall mortality and quality of life. Though there is evidence that COPD is associated with a higher prevalence of cardiovascular disease and major adverse cardiovascular events (MACE), it is unclear if this is true for patients with AATD-COPD. Methods: Prevalence of cardiovascular disease was determined in two separate severe AATD cohorts: AlphaNet, USA and the Birmingham AATD registry, UK. All patients had preexisting lung disease. Cardiovascular disease was defined as presence of any of the following: heart failure, ischaemic heart disease, atrial fibrillation, stroke, and myocardial infarction. A Cox proportional hazards model was used to assess the impact of prior cardiovascular disease and frequent exacerbator phenotype on risk of future MACE. Results: Out of 3493 patients with severe AATD, 14.7% had prior cardiovascular disease, including stroke (2.3%), myocardial infarction (2.2%), and heart failure (2.5%). Frequent exacerbators were more likely to have preexisting cardiovascular disease compared with those with one or no exacerbations in the preceding year (63% vs 44.8%, Conclusion: In severe AATD-COPD, MACE are associated with an increased exacerbation frequency, previous cardiovascular disease, and a history of smoking.
MeSH term(s)	Humans ; Cardiovascular Diseases/diagnosis ; Cardiovascular Diseases/epidemiology ; Prevalence ; Quality of Life ; Pulmonary Disease, Chronic Obstructive/diagnosis ; Pulmonary Disease, Chronic Obstructive/epidemiology ; alpha 1-Antitrypsin Deficiency/diagnosis ; alpha 1-Antitrypsin Deficiency/epidemiology ; Heart Failure/diagnosis ; Heart Failure/epidemiology ; Myocardial Infarction/diagnosis ; Myocardial Infarction/epidemiology ; Stroke/diagnosis ; Stroke/epidemiology
Language	English
Publishing date	2024-01-17
Publishing country	New Zealand
Document type	Journal Article
ZDB-ID	2212419-6
ISSN	1178-2005 ; 1176-9106
ISSN (online)	1178-2005
ISSN	1176-9106
DOI	10.2147/COPD.S419846
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Book ; Online: VR Job Interview Using a Gender-Swapped Avatar

Kim, Jieun / Sandhaus, Hauke / Fussell, Susan R.

2023

Abstract: Virtual Reality (VR) has emerged as a potential solution for mitigating bias in a job interview by hiding the applicants' demographic features. The current study examines the use of a gender-swapped avatar in a virtual job interview that affects the ... ...

Abstract	Virtual Reality (VR) has emerged as a potential solution for mitigating bias in a job interview by hiding the applicants' demographic features. The current study examines the use of a gender-swapped avatar in a virtual job interview that affects the applicants' perceptions and their performance evaluated by recruiters. With a mixed-method approach, we first conducted a lab experiment (N=8) exploring how using a gender-swapped avatar in a virtual job interview impacts perceived anxiety, confidence, competence, and ability to perform. Then, a semi-structured interview investigated the participants' VR interview experiences using an avatar. Our findings suggest that using gender-swapped avatars may reduce the anxiety that job applicants will experience during the interview. Also, the affinity diagram produced seven key themes highlighting the advantages and limitations of VR as an interview platform. These findings contribute to the emerging field of VR-based recruitment and have practical implications for promoting diversity and inclusion in the hiring process. Comment: CSCW 2022 Posters
Keywords	Computer Science - Human-Computer Interaction ; H.5.m
Subject code	331
Publishing date	2023-07-09
Publishing country	us
Document type	Book ; Online
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Article: Quality of Life and Mortality Outcomes for Augmentation Naïve and Augmented Patients with Severe Alpha-1 Antitrypsin Deficiency.

Ellis, Paul R / Holm, Kristen E / Choate, Radmila / Mannino, David M / Stockley, Robert A / Sandhaus, Robert A / Turner, Alice M

Chronic obstructive pulmonary diseases (Miami, Fla.)

2023 Volume 10, Issue 2, Page(s) 139–147

Abstract: Background: Intravenous alpha-1 antitrypsin (AAT) augmentation therapy is the only specific treatment available for alpha-1 antitrypsin deficiency (AATD)-related lung disease. It is widely used worldwide but remains unavailable to patients with AATD in ... ...

Abstract	Background: Intravenous alpha-1 antitrypsin (AAT) augmentation therapy is the only specific treatment available for alpha-1 antitrypsin deficiency (AATD)-related lung disease. It is widely used worldwide but remains unavailable to patients with AATD in the United Kingdom. While randomized trials of augmentation therapy have demonstrated biochemical efficacy and lung tissue preservation using computed tomography (CT) densitometry, these studies were not adequately powered to demonstrate effectiveness in well-accepted clinical endpoints such as quality of life (QOL) or survival. We used large, prospectively followed AATD patient populations in the United States and United Kingdom to explore these important clinical endpoints. Methods: Our inclusion criterion was adults with severe AATD and associated lung disease. The treatment group was U.S. AATD patients receiving augmentation therapy for lung disease. The control group was augmentation therapy naïve AATD patients. Multivariable regression and survival analyses were used to assess QOL and mortality outcomes respectively. Results: Mean annual deterioration of the St George's Respiratory Questionnaire total score was 1.43 points greater/year in the control group compared to those receiving augmentation therapy (95% confidence interval [CI] 0.47 to 2.39, Conclusions: A comparison of 2 highly characterized AATD cohorts was not able to reliably determine if AAT augmentation therapy improves QOL or mortality in patients with severe AATD-related lung disease. Alternative surrogate biomarkers of disease progression, such as CT lung density, may be a more pragmatic option.
Language	English
Publishing date	2023-02-10
Publishing country	United States
Document type	Journal Article
ZDB-ID	2771715-X
ISSN	2372-952X
ISSN	2372-952X
DOI	10.15326/jcopdf.2022.0339
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Article ; Conference proceedings: Successful Management of Pericardial Empyema due to Staphylococcus aureus Bacteremia

Maschke, A / Safarov, R / Oczko, J / von Samson-Himmelstjerna, P / Doenst, T / Sandhaus, T

Zentralblatt für Chirurgie - Zeitschrift für Allgemeine, Viszeral-, Thorax- und Gefäßchirurgie

2023 Volume 148, Issue S 01

Event/congress	32. Jahrestagung der Deutschen Gesellschaft für Thoraxchirurgie, Regensburg, 2023-09-20
Language	German
Publishing date	2023-08-01
Publisher	Georg Thieme Verlag
Publishing place	Stuttgart ; New York
Document type	Article ; Conference proceedings
ZDB-ID	200935-3
ISSN	1438-9592 ; 0044-409X
ISSN (online)	1438-9592
ISSN	0044-409X
DOI	10.1055/s-0043-1771149
Database	Thieme publisher's database

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Article: Patient-Reported Pulmonary Symptoms, Exacerbations, and Management in a Cohort of Patients With Alpha-1 Antitrypsin Deficiency.

Choate, Radmila / Sandhaus, Robert A / Holm, Kristen E / Mannino, David M / Strange, Charlie

Chronic obstructive pulmonary diseases (Miami, Fla.)

2022 Volume 9, Issue 4, Page(s) 549–561

Abstract: Rationale: Identifying pulmonary exacerbations in patients with alpha-1 antitrypsin deficiency (AATD) is critical as they are associated with disease progression and poor health-related quality of life. Not all changes in usual respiratory symptoms will ...

Abstract	Rationale: Identifying pulmonary exacerbations in patients with alpha-1 antitrypsin deficiency (AATD) is critical as they are associated with disease progression and poor health-related quality of life. Not all changes in usual respiratory symptoms will be identified as exacerbations by patients with AATD. Methods: Data collected via regular monthly telephone calls during the first year of the AlphaNet Step Forward Study were analyzed. AlphaNet subscribers were asked about changes in their usual respiratory symptoms, whether they considered changes in symptoms to be pulmonary exacerbations, and their management. Participants who reported changes in their usual respiratory symptoms throughout the year were included in the study. Per-patient and per-event analyses were performed. Results: Participants (n=316, age 58±10 years, 53% female) reported 797 events of changes in their usual respiratory symptoms in 1 year. Almost half (48%) of these symptom events were identified as pulmonary exacerbations by the study participants. The average number of symptoms was higher in events recognized by participants as exacerbations than those not identified as exacerbations (3.3±1.5 versus 1.8±1.1, respectively). A greater proportion of the exacerbation events were managed by taking antibiotics or corticosteroids or both (81%, 53%, and 41% of the events, respectively). With exacerbations, participants mainly spoke to the pulmonary specialist (39%) or went to the doctor's office (37%). Symptom events not recognized as exacerbations were mostly self-treated (56%). Conclusions: Changes in usual pulmonary symptoms are not universally recognized as exacerbations. Patients' perspectives in recognizing changes in pulmonary symptoms as exacerbation events are critical.
Language	English
Publishing date	2022-09-12
Publishing country	United States
Document type	Journal Article
ZDB-ID	2771715-X
ISSN	2372-952X
ISSN	2372-952X
DOI	10.15326/jcopdf.2022.0317
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Article ; Online: Association Between COVID-19 and Kawasaki Disease: Vigilance Required From Otolaryngologists: Authors' Response.

Sandhaus, Henya / Crosby, Dana / Sharma, Arun / Gregory, Stacie R

Otolaryngology--head and neck surgery : official journal of American Academy of Otolaryngology-Head and Neck Surgery

2020 Volume 164, Issue 4, Page(s) 901

MeSH term(s)	COVID-19 ; Humans ; Mucocutaneous Lymph Node Syndrome/complications ; Otolaryngologists ; Otolaryngology ; SARS-CoV-2
Keywords	covid19
Language	English
Publishing date	2020-10-06
Publishing country	England
Document type	Letter ; Comment
ZDB-ID	392085-9
ISSN	1097-6817 ; 0161-6439 ; 0194-5998
ISSN (online)	1097-6817
ISSN	0161-6439 ; 0194-5998
DOI	10.1177/0194599820964736
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