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  1. Article ; Online: A Single-Group Study on the Effect of OnabotulinumtoxinA in Patients with Chronic Migraine Associated with Medication Overuse Headache: Pain Catastrophizing Plays a Role.

    Grazzi, Licia / Montisano, Danilo Antonio / Rizzoli, Paul / Guastafierro, Erika / Marcassoli, Alessia / Fornari, Arianna / Raggi, Alberto

    Toxins

    2023  Volume 15, Issue 2

    Abstract: Pain catastrophizing and cutaneous allodynia are commonly altered in patients with chronic migraine associated with medication overuse headache (CM-MOH) and tend to improve in parallel with clinical improvement. The relation between pain catastrophizing ... ...

    Abstract Pain catastrophizing and cutaneous allodynia are commonly altered in patients with chronic migraine associated with medication overuse headache (CM-MOH) and tend to improve in parallel with clinical improvement. The relation between pain catastrophizing and cutaneous allodynia is poorly understood in patients with CM-MOH receiving OnabotulinumtoxinA therapy. In this single-arm open-label longitudinal observational study, patients with CM-MOH were assigned to structured withdrawal and then administered OnabotulinumtoxinA (5 sessions on a three-month basis, 195 UI per 31 sites). Headache frequency, medication intake, disability, impact, cutaneous allodynia and pain catastrophizing were evaluated with specific questionnaires. In total, 96 patients were enrolled and 79 completed the 12-month follow-up. With the exclusion of cutaneous allodynia and the magnification subscale of the pain catastrophizing questionnaire, all variables showed significant improvement by the sixth month, which was maintained at 12 months. Reduction of pain catastrophizing, and particularly of its helplessness subscale, was a significant predictor of reduction in headache frequency and medication intake. Pain catastrophizing is often implicated in the clinical improvement in patients with CM-MOH receiving behavioral treatments, but, in this study, also showed a role in patients receiving OnabotulinumtoxinA; combining OnabotulinumtoxinA and behavioral treatments specifically addressing pain catastrophizing might further enhance patients' clinical outcome.
    MeSH term(s) Humans ; Botulinum Toxins, Type A/therapeutic use ; Hyperalgesia/drug therapy ; Migraine Disorders/drug therapy ; Headache/drug therapy ; Pain/drug therapy ; Headache Disorders, Secondary/chemically induced ; Headache Disorders, Secondary/complications ; Headache Disorders, Secondary/drug therapy ; Catastrophization ; Chronic Disease
    Chemical Substances Botulinum Toxins, Type A (EC 3.4.24.69)
    Language English
    Publishing date 2023-01-17
    Publishing country Switzerland
    Document type Observational Study ; Journal Article
    ZDB-ID 2518395-3
    ISSN 2072-6651 ; 2072-6651
    ISSN (online) 2072-6651
    ISSN 2072-6651
    DOI 10.3390/toxins15020086
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  2. Article ; Online: The World Health Organization Intersectoral Global Action Plan on Epilepsy and Other Neurological Disorders and the headache revolution: from headache burden to a global action plan for headache disorders.

    Leonardi, Matilde / Martelletti, Paolo / Burstein, Rami / Fornari, Arianna / Grazzi, Licia / Guekht, Alla / Lipton, Richard B / Mitsikostas, Dimos Dimitrios / Olesen, Jes / Owolabi, Mayowa Ojo / Ruiz De la Torre, Elena / Sacco, Simona / Steiner, Timothy J / Surya, Nirmal / Takeshima, Takao / Tassorelli, Cristina / Wang, Shuu-Jiun / Wijeratne, Tissa / Yu, Shengyuan /
    Raggi, Alberto

    The journal of headache and pain

    2024  Volume 25, Issue 1, Page(s) 4

    Abstract: The World Health Organization (WHO) Intersectoral Global Action Plan on Epilepsy and Other Neurological Disorders was developed by WHO to address the worldwide challenges and gaps in provision of care and services for people with epilepsy and other ... ...

    Abstract The World Health Organization (WHO) Intersectoral Global Action Plan on Epilepsy and Other Neurological Disorders was developed by WHO to address the worldwide challenges and gaps in provision of care and services for people with epilepsy and other neurological disorders and to ensure a comprehensive, coordinated response across sectors to the burden of neurologic diseases and to promote brain health across life-course. Headache disorders constitute the second most burdensome of all neurological diseases after stroke, but the first if young and midlife adults are taken into account. Despite the availability of a range of treatments, disability associated with headache disorders, and with migraine, remains very high. In addition, there are inequalities between high-income and low and middle income countries in access to medical care. In line with several brain health initiatives following the WHOiGAP resolution, herein we tailor the main pillars of the action plan to headache disorders: (1) raising policy prioritization and strengthen governance; (2) providing effective, timely and responsive diagnosis, treatment and care; (3) implementing strategies for promotion and prevention; (4) fostering research and innovation and strengthen information systems. Specific targets for future policy actions are proposed. The Global Action Plan triggered a revolution in neurology, not only by increasing public awareness of brain disorders and brain health but also by boosting the number of neurologists in training, raising research funding and making neurology a public health priority for policy makers. Reducing the burden of headache disorders will not only improve the quality of life and wellbeing of people with headache but also reduce the burden of neurological disorders increasing global brain health and, thus, global population health.
    MeSH term(s) Adult ; Humans ; Quality of Life ; Headache/therapy ; Headache Disorders/prevention & control ; World Health Organization ; Epilepsy/therapy ; Global Health
    Language English
    Publishing date 2024-01-04
    Publishing country England
    Document type Journal Article ; Review
    ZDB-ID 2036768-5
    ISSN 1129-2377 ; 1129-2369
    ISSN (online) 1129-2377
    ISSN 1129-2369
    DOI 10.1186/s10194-023-01700-3
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  3. Article ; Online: The psychosocial impact of haemophilia from patients' and caregivers' point of view: The results of an Italian survey.

    Fornari, Arianna / Antonazzo, Ippazio Cosimo / Rocino, Angiola / Preti, Daniele / Fragomeno, Anna / Cucuzza, Francesco / Ceresi, Nicola / Santoro, Cristina / Ferretti, Antonietta / Facchetti, Rita / Cozzolino, Paolo / Biasoli, Chiara / Cassone, Cristina / Coppola, Antonio / Cortesi, Paolo Angelo / Mantovani, Lorenzo Giovanni

    Haemophilia : the official journal of the World Federation of Hemophilia

    2023  Volume 30, Issue 2, Page(s) 449–462

    Abstract: Backgroud: A huge amount of data about psychosocial issues of people with haemophilia (PwH) are available; however, these materials are fragmentary and largely outdated, failing to reflect the impact of current treatment strategies.: Aim: Describing ... ...

    Abstract Backgroud: A huge amount of data about psychosocial issues of people with haemophilia (PwH) are available; however, these materials are fragmentary and largely outdated, failing to reflect the impact of current treatment strategies.
    Aim: Describing the influence of illness on psychosocial aspects of adult PwH (≥18 years) and caregivers of children with haemophilia (CPwH) without inhibitors, in Italy.
    Methods: Surveys (for adult PwH, CPwH and haemophilia specialists) were developed by a multidisciplinary working group and conducted from November 2019 to June 2020.
    Results: A total of 120 PwH without inhibitors and 79 CPwH completed the survey. Adult patients reported a significant impairment in many psychosocial aspects, including working activities, relations with family members and social relations. Caregivers generally reported better scores in all aspects of the survey. Mobility, Pain and Mental health domains of EQ-5D were the most frequently impaired in both patients and caregivers, reducing the perceived quality of life. Genetic counselling was an important issue, 53% of CPwH declaring unawareness of their carrier status, as well as the psychological support offered by the reference center, 67.0% of respondents reporting that no psychological support was provided at the time of diagnosis communication.
    Conclusion: This study provides information about PwH's and CPwH's point of view in the current scenario of continuous innovations in haemophilia treatment and management furthermore, updated insights on psychosocial problems faced by patients and caregivers are reported.
    MeSH term(s) Adult ; Child ; Humans ; Hemophilia A/therapy ; Quality of Life ; Caregivers/psychology ; Surveys and Questionnaires ; Italy
    Language English
    Publishing date 2023-12-26
    Publishing country England
    Document type Journal Article
    ZDB-ID 1229713-6
    ISSN 1365-2516 ; 1351-8216 ; 1355-0691
    ISSN (online) 1365-2516
    ISSN 1351-8216 ; 1355-0691
    DOI 10.1111/hae.14926
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    Zs.A 4249: Show issues Location:
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  4. Article ; Online: Haemophilia management and treatment: An Italian survey on patients', caregivers' and clinicians' point of view.

    Cortesi, Paolo Angelo / Rocino, Angiola / Preti, Daniele / Fragomeno, Anna / Cucuzza, Francesco / Ceresi, Nicola / Santoro, Cristina / Ferretti, Antonietta / Fornari, Arianna / Antonazzo, Ippazio Cosimo / Facchetti, Rita / Cozzolino, Paolo / Biasoli, Chiara / Cassone, Cristina / Coppola, Antonio / Mantovani, Lorenzo G

    Haemophilia : the official journal of the World Federation of Hemophilia

    2022  Volume 28, Issue 2, Page(s) 254–263

    Abstract: Introduction: Haemophilia management and patients' quality of life significantly improved. However, data on current patients', caregivers' and clinicians' satisfaction and limitations of treatments and haemophilia management are limited.: Aim: ... ...

    Abstract Introduction: Haemophilia management and patients' quality of life significantly improved. However, data on current patients', caregivers' and clinicians' satisfaction and limitations of treatments and haemophilia management are limited.
    Aim: Assessing the management satisfaction and unmet needs from the perspective of Italian patients with haemophilia (PWH) without inhibitors (or caregivers if children) and of specialist physicians.
    Methods: Surveys (for patients≥18 years, caregivers of children and haemophilia specialists) were developed by a multidisciplinary working group and conducted from November 2019 to June 2020.
    Results: Among 275 participants, 120 (43.6%) were PWH without inhibitors, 79 (28.7%) caregivers and 37 (13.4%) clinicians. Patients and caregivers perceived a higher control of the disease compared to clinicians. However, more than 40% of patients and caregivers reported to feel significantly conditioned by the risk of bleeding during their daily life. PWH reported a 6-month mean/median (range) of bleeds 2.3/.0 (0-24) and caregivers 1.3/.0 (0-16) in children. The treatment burden (frequency of administration) was not satisfactory for more than half adults and caregivers of children treated with prophylaxis. A good access to treatment, haemophilia centres and medical service was reported, with issues associated to the multidisciplinary approach and treatment at emergency department.
    Conclusions: This large national study provides an updated overview of haemophilia care in Italy from different points of views, highlighting positive aspects and unmet needs. This information can guide future interventions to improve haemophilia management and the assessment of impact of new treatment options.
    MeSH term(s) Adult ; Caregivers ; Child ; Hemophilia A/drug therapy ; Humans ; Italy ; Quality of Life ; Surveys and Questionnaires
    Language English
    Publishing date 2022-02-08
    Publishing country England
    Document type Journal Article ; Review
    ZDB-ID 1229713-6
    ISSN 1365-2516 ; 1351-8216 ; 1355-0691
    ISSN (online) 1365-2516
    ISSN 1351-8216 ; 1355-0691
    DOI 10.1111/hae.14504
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  5. Article ; Online: The value-based healthcare approach to haemophilia: Development of outcome measures for the evaluation of care of people with haemophilia.

    Cortesi, Paolo Angelo / Fornari, Carla / Conti, Sara / Pollio, Berardino / Boccalandro, Elena / Buzzi, Andrea / Carulli, Christian / Coppola, Antonio / De Cristofaro, Raimondo / Di Minno, Matteo Nicola Dario / Dolan, Gerard / Ferri Grazzi, Enrico / Fornari, Arianna / Gualtierotti, Roberta / Hermans, Cedric / Jiménez-Juste, Victor / Kenet, Gili / Lupi, Angelo / Martinoli, Carlo /
    Mansueto, Maria Francesca / Nicolò, Gabriella / Tagliaferri, Annarita / Gringeri, Alessandro / Molinari, Angelo Claudio / Mantovani, Lorenzo Giovanni / Castaman, Giancarlo

    Haemophilia : the official journal of the World Federation of Hemophilia

    2024  Volume 30, Issue 2, Page(s) 437–448

    Abstract: Introduction: Considering the advances in haemophilia management and treatment observed in the last decades, a new set of value-based outcome indicators is needed to assess the quality of care and the impact of these medical innovations.: Aim: The ... ...

    Abstract Introduction: Considering the advances in haemophilia management and treatment observed in the last decades, a new set of value-based outcome indicators is needed to assess the quality of care and the impact of these medical innovations.
    Aim: The Value-Based Healthcare in Haemophilia project aimed to define a set of clinical outcome indicators (COIs) and patient-reported outcome indicators (PROIs) to assess quality of care in haemophilia in high-income countries with a value-based approach to inform and guide the decision-making process.
    Methods: A Value-based healthcare approach based on the available literature, current guidelines and the involvement of a multidisciplinary group of experts was applied to generate a set of indicators to assess the quality of care of haemophilia.
    Results: A final list of three COIs and five PROIs was created and validated. The identified COIs focus on two domains: musculoskeletal health and function, and safety. The identified PROIs cover five domains: bleeding frequency, pain, mobility and physical activities, Health-Related Quality of Life and satisfaction. Finally, two composite outcomes, one based on COIs, and one based on PROIs, were proposed as synthetic outcome indicators of quality of care.
    Conclusion: The presented standard set of health outcome indicators provides the basis for harmonised longitudinal and cross-sectional monitoring and comparison. The implementation of this value-based approach would enable a more robust assessment of quality of care in haemophilia, within a framework of continuous treatment improvements with potential added value for patients. Moreover, proposed COIs and PROIs should be reviewed and updated routinely.
    MeSH term(s) Humans ; Hemophilia A/drug therapy ; Quality of Life ; Cross-Sectional Studies ; Value-Based Health Care ; Outcome Assessment, Health Care
    Language English
    Publishing date 2024-02-05
    Publishing country England
    Document type Journal Article
    ZDB-ID 1229713-6
    ISSN 1365-2516 ; 1351-8216 ; 1355-0691
    ISSN (online) 1365-2516
    ISSN 1351-8216 ; 1355-0691
    DOI 10.1111/hae.14943
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  6. Article ; Online: Prevalence and Trajectories of Post-COVID-19 Neurological Manifestations: A Systematic Review and Meta-Analysis.

    Giussani, Giorgia / Westenberg, Erica / Garcia-Azorin, David / Bianchi, Elisa / Yusof Khan, Abdul Hanif Khan / Allegri, Ricardo Francisco / Atalar, Arife Çimen / Baykan, Betul / Crivelli, Lucia / Fornari, Arianna / Frontera, Jennifer A / Guekht, Alla / Helbok, Raimund / Hoo, Fan Kee / Kivipelto, Miia / Leonardi, Matilde / Lopez Rocha, Ana Sabsil / Mangialasche, Francesca / Marcassoli, Alessia /
    Özdag Acarli, Ayse Nur / Ozge, Aynur / Prasad, Kameshwar / Prasad, Manya / Sviatskaia, Ekaterina / Thakur, Kiran / Vogrig, Alberto / Leone, Maurizio / Winkler, Andrea Sylvia

    Neuroepidemiology

    2024  Volume 58, Issue 2, Page(s) 120–133

    Abstract: Introduction: The aim of this systematic review and meta-analysis was to evaluate the prevalence of thirteen neurological manifestations in people affected by COVID-19 during the acute phase and at 3, 6, 9 and 12-month follow-up time points.: Methods!# ...

    Abstract Introduction: The aim of this systematic review and meta-analysis was to evaluate the prevalence of thirteen neurological manifestations in people affected by COVID-19 during the acute phase and at 3, 6, 9 and 12-month follow-up time points.
    Methods: The study protocol was registered with PROSPERO (CRD42022325505). MEDLINE (PubMed), Embase, and the Cochrane Library were used as information sources. Eligible studies included original articles of cohort studies, case-control studies, cross-sectional studies, and case series with ≥5 subjects that reported the prevalence and type of neurological manifestations, with a minimum follow-up of 3 months after the acute phase of COVID-19 disease. Two independent reviewers screened studies from January 1, 2020, to June 16, 2022. The following manifestations were assessed: neuromuscular disorders, encephalopathy/altered mental status/delirium, movement disorders, dysautonomia, cerebrovascular disorders, cognitive impairment/dementia, sleep disorders, seizures, syncope/transient loss of consciousness, fatigue, gait disturbances, anosmia/hyposmia, and headache. The pooled prevalence and their 95% confidence intervals were calculated at the six pre-specified times.
    Results: 126 of 6,565 screened studies fulfilled the eligibility criteria, accounting for 1,542,300 subjects with COVID-19 disease. Of these, four studies only reported data on neurological conditions other than the 13 selected. The neurological disorders with the highest pooled prevalence estimates (per 100 subjects) during the acute phase of COVID-19 were anosmia/hyposmia, fatigue, headache, encephalopathy, cognitive impairment, and cerebrovascular disease. At 3-month follow-up, the pooled prevalence of fatigue, cognitive impairment, and sleep disorders was still 20% and higher. At six- and 9-month follow-up, there was a tendency for fatigue, cognitive impairment, sleep disorders, anosmia/hyposmia, and headache to further increase in prevalence. At 12-month follow-up, prevalence estimates decreased but remained high for some disorders, such as fatigue and anosmia/hyposmia. Other neurological disorders had a more fluctuating occurrence.
    Discussion: Neurological manifestations were prevalent during the acute phase of COVID-19 and over the 1-year follow-up period, with the highest overall prevalence estimates for fatigue, cognitive impairment, sleep disorders, anosmia/hyposmia, and headache. There was a downward trend over time, suggesting that neurological manifestations in the early post-COVID-19 phase may be long-lasting but not permanent. However, especially for the 12-month follow-up time point, more robust data are needed to confirm this trend.
    MeSH term(s) Humans ; COVID-19/epidemiology ; Anosmia ; Prevalence ; Cross-Sectional Studies ; Nervous System Diseases/epidemiology ; Cerebrovascular Disorders ; Headache ; Sleep Wake Disorders ; Fatigue/epidemiology
    Language English
    Publishing date 2024-01-25
    Publishing country Switzerland
    Document type Meta-Analysis ; Systematic Review
    ZDB-ID 603189-4
    ISSN 1423-0208 ; 0251-5350
    ISSN (online) 1423-0208
    ISSN 0251-5350
    DOI 10.1159/000536352
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  7. Article ; Online: 20 Years of ICF-International Classification of Functioning, Disability and Health: Uses and Applications around the World.

    Leonardi, Matilde / Lee, Haejung / Kostanjsek, Nenad / Fornari, Arianna / Raggi, Alberto / Martinuzzi, Andrea / Yáñez, Manuel / Almborg, Ann-Helene / Fresk, Magdalena / Besstrashnova, Yanina / Shoshmin, Alexander / Castro, Shamyr Sulyvan / Cordeiro, Eduardo Santana / Cuenot, Marie / Haas, Christine / Maart, Soraya / Maribo, Thomas / Miller, Janice / Mukaino, Masahiko /
    Snyman, Stefanus / Trinks, Ulrike / Anttila, Heidi / Paltamaa, Jaana / Saleeby, Patricia / Frattura, Lucilla / Madden, Ros / Sykes, Catherine / Gool, Coen H van / Hrkal, Jakub / Zvolský, Miroslav / Sládková, Petra / Vikdal, Marie / Harðardóttir, Guðrún Auður / Foubert, Josephine / Jakob, Robert / Coenen, Michaela / Kraus de Camargo, Olaf

    International journal of environmental research and public health

    2022  Volume 19, Issue 18

    Abstract: The International Classification of Functioning Disability and Health (ICF) was approved in 2001 and, since then, several studies reported the increased interest about its use in different sectors. A recent overview that summarizes its applications is ... ...

    Abstract The International Classification of Functioning Disability and Health (ICF) was approved in 2001 and, since then, several studies reported the increased interest about its use in different sectors. A recent overview that summarizes its applications is lacking. This study aims to provide an updated overview about 20 years of ICF application through an international online questionnaire, developed by the byline authors, and sent to each World Health Organization Collaborating Centers of the Family of International Classifications (WHO-FIC CCs). Data was collected during October 2020 and December 2021 and descriptive content analyses were used to report main results. Results show how, in most of the respondent countries represented by WHO-FIC CCs, ICF was mainly used in clinical practice, policy development and social policy, and in education areas. Despite its applications in different sectors, ICF use is not mandatory in most countries but, where used, it provides a biopsychosocial framework for policy development in health, functioning and disability. The study provides information about the needs related to ICF applications, that can be useful to organize targeted intervention plans. Furthermore, this survey methodology can be re-proposed periodically to monitor the use of the ICF in the future.
    MeSH term(s) Disability Evaluation ; Disabled Persons ; Humans ; International Classification of Functioning, Disability and Health ; Surveys and Questionnaires ; World Health Organization
    Language English
    Publishing date 2022-09-08
    Publishing country Switzerland
    Document type Journal Article ; Review
    ZDB-ID 2175195-X
    ISSN 1660-4601 ; 1661-7827
    ISSN (online) 1660-4601
    ISSN 1661-7827
    DOI 10.3390/ijerph191811321
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