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COVID answers in Scientific Journals all over the world


41 Results       Page 1

 [1] 
Springer (Biomed Central Ltd.): Orphanet Journal of Rare Diseases
  original article Date Title Authors   All Authors
1 [GO] 2024―Feb―21 The COVID-19 pandemic impact on continuity of care provision on rare brain diseases and on ataxias, dystonia and PKU. A scoping review Sara Cannizzo, Vinciane Quoidbach, Paola Giunti, Wolfgang Oertel, Gregory Pastores, Maja Relja, Giuseppe Turchetti
2 [GO] 2024―Jan―30 A shock to the (health) system: experiences of adults with rare disorders during the first COVID-19 wave Kathleen R. Bogart, Annelise Hartinger, Maggie Klaus, Elizabeth Jenkinson
3 [GO] 2023―Nov―11 Effects of COVID-19 infection in patients with autoimmune pulmonary alveolar proteinosis: a single-center study Chuanxin Duan, Wangji Zhou, Miaoyan Zhang, Chongsheng Cheng, Wenshuai Xu, Jinrong Dai, et al. (+8)
4 [GO] 2023―Oct―27 Safety outcomes and patients’ preferences for home-based intravenous enzyme replacement therapy (ERT) in pompe disease and mucopolysaccharidosis type I (MPS I) disorder: COVID-19 and beyond Antonio Toscano, Olimpia Musumeci, Michele Sacchini, Sabrina Ravaglia, Gabriele Siciliano, Agata Fiumara, et al. (+13)
5 [GO] 2023―Sep―12 Symptoms of SARS-CoV-2 infection and vaccine status of sixty-seven adult patients affected by inherited metabolic diseases: a phone survey Lucia Brodosi, Michele Stecchi, Dorina Mita, Francesca Marchignoli, Valeria Guarneri, Giulio Agnelli, et al. (+5)
6 [GO] 2023―Jun―21 Impact of the COVID-19 pandemic on health care and daily life of patients with rare diseases from the perspective of patient organizations - a qualitative interview study David Zybarth, Maja Brandt, Christine Mundlos, Laura Inhestern
7 [GO] 2023―Mar―20 A follow-up report on the published paper Social and clinical impact of COVID-19 on patients with fibrodysplasia ossificans progressiva Hayley Wallace, Rhonda H. Lee, Edward C. Hsiao
8 [GO] 2023―Mar―10 Increased incidence of adult-onset Still’s disease in association with COVID-19 vaccination and SARS-CoV-2 infection Maxime N. Gottschalk, Max Heiland, Susanne Nahles, Robert Preissner, William A. Petri, Stephanie Wendy, Saskia Preissner
9 [GO] 2022―Dec―26 The psychosocial situation of families caring for children with rare diseases during the COVID-19 pandemic: results of a cross-sectional online survey Lydia Rihm, Mareike Dreier, Farhad Rezvani, Silke Wiegand-Grefe, Jörg Dirmaier
10 [GO] 2022―Dec―09 Impact of the COVID-19 pandemic on the care of rare and undiagnosed diseases patients in France: a longitudinal population-based study Louis Soussand, Mathieu Kuchenbuch, Claude Messiaen, Arnaud Sandrin, Anne-Sophie Jannot, Rima Nabbout
11 [GO] 2022―Sep―05 The impact of the COVID-19 pandemic on Fabry Disease Patients: an examination of Mood Status, Therapy Adherence, and COVID-19 infection Cebrail Karaca, Mevlut Tamer Dincer, Seyda Gul Ozcan, Betul Sarac, Saffa Ahmadzada, Selma Alagoz, et al. (+4)
12 [GO] 2022―Jun―28 COVID-19 in Fabry disease: a reference center prospective study Christina Bothou, Lanja Saleh, Arnold von Eckardstein, Felix Beuschlein, Albina Nowak
13 [GO] 2022―Apr―12 Increased COVID-19 mortality rate in rare disease patients: a retrospective cohort study in participants of the Genomics England 100,000 Genomes project Huayu Zhang, Johan H. Thygesen, Ting Shi, Georgios V. Gkoutos, Harry Hemingway, Bruce Guthrie, Honghan Wu
14 [GO] 2022―Mar―04 Social and clinical impact of COVID-19 on patients with fibrodysplasia ossificans progressiva Samuel Kou, Sammi Kile, Sai Samhith Kambampati, Evelyn C. Brady, Hayley Wallace, Carlos M. De Sousa, et al. (+4)
15 [GO] 2022―Mar―04 One year of COVID-19: infection rates and symptoms in patients with inherited metabolic diseases followed by MetabERN Laura Paneghetti, Cinzia Maria Bellettato, Annalisa Sechi, Karolina M. Stepien, Maurizio Scarpa
16 [GO] 2022―Mar―04 Mild disease course of SARS-CoV-2 infections and mild side effects of vaccination in Pompe disease: a cohort description G. Ismailova, M. J. Mackenbach, J. M. P. van den Hout, A. T. van der Ploeg, E. Brusse, M. A. E. M. Wagenmakers
17 [GO] 2022―Feb―21 The presentation, course and outcome of COVID-19 infection in people with Prader-Willi syndrome: unexpected findings from an international survey J. E. Whittington, A. J. Holland, D. J. Driscoll, N. Hodebeck-Stuntebeck, A. Hoctor
18 [GO] 2022―Jan―19 Impact of the COVID-19 pandemic on access to the cerliponase alfa managed access agreement in England for CLN2 treatment Amanda Mortensen, Eva M. Raebel, Samantha Wiseman
19 [GO] 2022―Jan―04 A post pandemic roadmap toward remote assessment for neuromuscular disorders: limitations and opportunities Jacqueline Montes, Katy J. Eichinger, Amy Pasternak, Cara Yochai, Kristin J. Krosschell
20 [GO] 2021―Nov―27 Quality of life and mental health of children with rare congenital surgical diseases and their parents during the COVID-19 pandemic Mareike Fuerboeter, Johannes Boettcher, Claus Barkmann, Holger Zapf, Rojin Nazarian, Silke Wiegand-Grefe, et al. (+2)
21 [GO] 2021―Oct―26 A multicenter cross-sectional French study of the impact of COVID-19 on neuromuscular diseases Lucie Isoline Pisella, Sara Fernandes, Guilhem Solé, Tanya Stojkovic, Céline Tard, Jean-Baptiste Chanson, et al. (+39)
22 [GO] 2021―Sep―08 Characterization of epidemiological distribution and outcome of COVID-19 in patients with hereditary hemorrhagic telangiectasia: a nationwide retrospective multi-centre study during first wave in Italy Patrizia Suppressa, Fabio Pagella, Gennaro Mariano Lenato, Eleonora Gaetani, Ilaria Serio, Maristella Salvatora Masala, et al. (+8)
23 [GO] 2021―Sep―08 The effects of the COVID-19 pandemic on patients with lysosomal storage disorders in Israel Eyal Kristal, Ben Pode-Shakked, Guy Hazan, Ehud Banne, Galina Ling, Odeya David, et al. (+9)
24 [GO] 2021―Sep―03 Increased risk of chronic fatigue and hair loss following COVID-19 in individuals with hypohidrotic ectodermal dysplasia Verena Hennig, Wolfgang Schuh, Antje Neubert, Dirk Mielenz, Hans-Martin Jäck, Holm Schneider
25 [GO] 2021―Aug―19 A retrospective study on disease management in children and adolescents with phenylketonuria during the Covid-19 pandemic lockdown in Austria Marion Herle, Michaela Brunner-Krainz, Daniela Karall, Bernadette Goeschl, Dorothea Möslinger, Joachim Zobel, et al. (+5)
26 [GO] 2021―Aug―12 Hospital mortality in patients with rare diseases during pandemics: lessons learnt from the COVID-19 and SARS pandemics Claudia Ching Yan Chung, Wilfred Hing Sang Wong, Brian Hon Yin Chung
27 [GO] 2021―Jul―21 Paradoxical low severity of COVID-19 in Prader-Willi syndrome: data from a French survey on 647 patients Muriel Coupaye, Virginie Laurier, Grégoire Benvegnu, Christine Poitou, Pauline Faucher, Héléna Mosbah, et al. (+8)
28 [GO] 2021―Jul―16 Gene therapies and COVID-19 vaccines: a necessary discussion in relation with viral vector-based approaches Angel Aledo-Serrano, Antonio Gil-Nagel, Julian Isla, Ana Mingorance, Fernando Mendez-Hermida, Ruben Hernandez-Alcoceba
29 [GO] 2021―May―06 ATTR amyloidosis during the COVID-19 pandemic: insights from a global medical roundtable Thomas H. Brannagan, Michaela Auer-Grumbach, John L. Berk, Chiara Briani, Vera Bril, Teresa Coelho, et al. (+21)
30 [GO] 2021―May―05 Effects of the COVID-19 pandemic and lockdown on the mental and physical health of adults with Prader-Willi syndrome Helena Mosbah, Muriel Coupaye, Flavien Jacques, Maithé Tauber, Karine Clément, Jean-Michel Oppert, Christine Poitou
31 [GO] 2021―May―03 PH CARE COVID survey: an international patient survey on the care for pulmonary hypertension patients during the early phase of the COVID-19 pandemic Laurent Godinas, Keerthana Iyer, Gergely Meszaros, Rozenn Quarck, Pilar Escribano-Subias, Anton Vonk Noordegraaf, et al. (+11)
32 [GO] 2021―Mar―05 A thematic study: impact of COVID-19 pandemic on rare disease organisations and patients across ten jurisdictions in the Asia Pacific region Claudia Ching Yan Chung, Yvette Nga Chung Ng, Ritu Jain, Brian Hon Yin Chung
33 [GO] 2021―Mar―01 A comprehensive review of hydroxyurea for β-haemoglobinopathies: the role revisited during COVID-19 pandemic Nirmani Yasara, Anuja Premawardhena, Sachith Mettananda
34 [GO] 2021―Feb―26 Unmasked: an insight into three patients’ rare disease experiences during the COVID-19 pandemic Catriona Chaplin
35 [GO] 2021―Feb―01 The impact of the COVID-19 pandemic on neurofibromatosis clinical care and research Heather B. Radtke, Bonita P. Klein-Tasman, Vanessa L. Merker, Pamela Knight, Nicole J. Ullrich, Justin T. Jordan, et al. (+2)
36 [GO] 2020―Dec―18 Diagnostic testing for SARS-CoV-2 infection in HHT patients: nasopharyngeal versus oropharyngeal swab Fabio Pagella, Roberta Lizzio, Sara Ugolini, Giuseppe Spinozzi, Eugenia Maiorano, Patrizia Suppressa, et al. (+2)
37 [GO] 2020―Dec―03 The impact of COVID-19 on rare metabolic patients and healthcare providers: results from two MetabERN surveys C. Lampe, C. Dionisi-Vici, C. M. Bellettato, L. Paneghetti, C. van Lingen, S. Bond, et al. (+6)
38 [GO] 2020―Oct―28 SARS-CoV-2 infection in a patient with propionic acidemia Anna Caciotti, Elena Procopio, Francesca Pochiero, Silvia Falliano, Giuseppe Indolfi, Maria Alice Donati, et al. (+3)
39 [GO] 2020―Sep―25 The forgotten people with thalassemia in the time of COVID-19: South Asian perspective Mohammad Sorowar Hossain, Enayetur Raheem, Mahbubul H. Siddiqee
40 [GO] 2020―Aug―31 Providing high-quality care remotely to patients with rare bone diseases during COVID-19 pandemic E. Brizola, G. Adami, G. I. Baroncelli, M. F. Bedeschi, P. Berardi, S. Boero, et al. (+19)
41 [GO] 2020―Jun―22 COVID-19 pandemia and inherited cardiomyopathies and channelopathies: a short term and long term perspective Giuseppe Limongelli, Lia Crotti
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41 Results       Page 1


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