Gene Therapy in Hemophilia: A Transformational Patient Experience
Rasul, Enayet, Hallock, Ryan, Hellmann, Magnus, Konduros, Jay, Pembroke, Luke, LeCleir, Gregory, Malacan, Jean, von Mackensen, Sylvia
Published in Journal of patient experience (01.01.2023)
Published in Journal of patient experience (01.01.2023)
Get full text
Journal Article
Impact of COVID‐19 pandemic on mental health of patients with inherited bleeding disorders in Germany
Mackensen, Sylvia, Halimeh, Susan, Siebert, Manuela, Wermes, Cornelia, Hassenpflug, Wolf, Holstein, Katharina, Olivieri, Martin
Published in Haemophilia : the official journal of the World Federation of Hemophilia (01.11.2020)
Published in Haemophilia : the official journal of the World Federation of Hemophilia (01.11.2020)
Get full text
Journal Article
The effect of emicizumab prophylaxis on health‐related outcomes in persons with haemophilia A with inhibitors: HAVEN 1 Study
Oldenburg, Johannes, Mahlangu, Johnny N., Bujan, Willem, Trask, Peter, Callaghan, Michael U., Young, Guy, Asikanius, Elina, Peyvandi, Flora, Santagostino, Elena, Kruse‐Jarres, Rebecca, Negrier, Claude, Kessler, Craig, Xu, Jin, Windyga, Jerzy, Shima, Midori, von Mackensen, Sylvia
Published in Haemophilia : the official journal of the World Federation of Hemophilia (01.01.2019)
Published in Haemophilia : the official journal of the World Federation of Hemophilia (01.01.2019)
Get full text
Journal Article
The effect of a virtual child disease management programme on burden and social adjustment of caregivers of children with coagulation factor deficiencies
Rambod, Masoume, Pasyar, Nilofar, Irannejad Parizi, Fatemeh, Edraki, Mitra, Khair, Kate, Mackensen, Sylvia
Published in Haemophilia : the official journal of the World Federation of Hemophilia (01.01.2023)
Published in Haemophilia : the official journal of the World Federation of Hemophilia (01.01.2023)
Get full text
Journal Article
Determining meaningful health‐related quality‐of‐life improvement in persons with haemophilia A using the Haemophilia Quality of Life Questionnaire for Adults (Haem‐A‐QoL)
Mackensen, Sylvia, Catalani, Olivier, Asikanius, Elina, Paz‐Priel, Ido, Lehle, Michaela, Trask, Peter
Published in Haemophilia : the official journal of the World Federation of Hemophilia (01.11.2020)
Published in Haemophilia : the official journal of the World Federation of Hemophilia (01.11.2020)
Get full text
Journal Article
The burden of bleeds and other clinical determinants on caregivers of children with haemophilia (the BBC Study)
Khair, Kate, Klukowska, Anna, Myrin Westesson, Linda, Kavakli, Kaan, Escuriola, Carmen, Uitslager, Nanda, Santoro, Cristina, Holland, Mike, von Mackensen, Sylvia
Published in Haemophilia : the official journal of the World Federation of Hemophilia (01.05.2019)
Published in Haemophilia : the official journal of the World Federation of Hemophilia (01.05.2019)
Get full text
Journal Article
The impact of psychosocial determinants on caregivers’ burden of children with haemophilia (results of the BBC study)
von Mackensen, Sylvia, Myrin Westesson, Linda, Kavakli, Kaan, Klukowska, Anna, Escuriola, Carmen, Uitslager, Nanda, Santoro, Cristina, Holland, Mike, Khair, Kate
Published in Haemophilia : the official journal of the World Federation of Hemophilia (01.05.2019)
Published in Haemophilia : the official journal of the World Federation of Hemophilia (01.05.2019)
Get full text
Journal Article
Health‐related quality of life and caregiver burden of emicizumab in children with haemophilia A and factor VIII inhibitors—Results from the HAVEN 2 study
Mancuso, Maria Elisa, Mahlangu, Johnny, Sidonio, Robert, Trask, Peter, Uguen, Marianne, Chang, Tiffany, Shima, Midori, Young, Guy, Oldenburg, Johannes, Mackensen, Sylvia
Published in Haemophilia : the official journal of the World Federation of Hemophilia (01.11.2020)
Published in Haemophilia : the official journal of the World Federation of Hemophilia (01.11.2020)
Get full text
Journal Article
The effect of emicizumab prophylaxis on long‐term, self‐reported physical health in persons with haemophilia A without factor VIII inhibitors in the HAVEN 3 and HAVEN 4 studies
Skinner, Mark W., Négrier, Claude, Paz‐Priel, Ido, Chebon, Sammy, Jiménez‐Yuste, Victor, Callaghan, Michael U., Lehle, Michaela, Niggli, Markus, Mahlangu, Johnny, Shapiro, Amy, Shima, Midori, Campinha‐Bacote, Avrita, Levy, Gallia G., Oldenburg, Johannes, Mackensen, Sylvia, Pipe, Steven W.
Published in Haemophilia : the official journal of the World Federation of Hemophilia (01.09.2021)
Published in Haemophilia : the official journal of the World Federation of Hemophilia (01.09.2021)
Get full text
Journal Article
Health‐related quality of life and health status in persons with haemophilia A with inhibitors: A prospective, multicentre, non‐interventional study (NIS)
Mahlangu, Johnny, Oldenburg, Johannes, Callaghan, Michael U., Shima, Midori, Mancuso, Maria Elisa, Trask, Peter, Recht, Michael, Garcia, Claudia, Yang, Renchi, Lehle, Michaela, Macharia, Harrison, Asikanius, Elina, Levy, Gallia G., Kruse‐Jarres, Rebecca, von Mackensen, Sylvia
Published in Haemophilia : the official journal of the World Federation of Hemophilia (01.05.2019)
Published in Haemophilia : the official journal of the World Federation of Hemophilia (01.05.2019)
Get full text
Journal Article
Health‐related quality of life and health status in adolescent and adult people with haemophilia A without factor VIII inhibitors—A non‐interventional study
Oldenburg, Johannes, Tran, Huyen, Peyvandi, Flora, Núñez, Ramiro, Trask, Peter, Chebon, Sammy, Mahlangu, Johnny N., Lehle, Michaela, Jiménez‐Yuste, Victor, Mackensen, Sylvia
Published in Haemophilia : the official journal of the World Federation of Hemophilia (01.05.2021)
Published in Haemophilia : the official journal of the World Federation of Hemophilia (01.05.2021)
Get full text
Journal Article
Association of patient, treatment and disease characteristics with patient‐reported outcomes: Results of the ECHO Registry
Hay, Charles R. M., Makris, Michael, Shima, Midori, Nagao, Azusa, Jiménez‐Yuste, Víctor, Skinner, Mark, Kessler, Craig M., Mackensen, Sylvia
Published in Haemophilia : the official journal of the World Federation of Hemophilia (01.01.2024)
Published in Haemophilia : the official journal of the World Federation of Hemophilia (01.01.2024)
Get full text
Journal Article
Cross‐cultural adaptation and validation of Haem‐A‐QoL in Côte d'Ivoire
Lambert, Catherine, Meité, N'Dogomo, Sanogo, Ibrahima, Lobet, Sébastien, Mackensen, Sylvia, Hermans, Cedric
Published in Haemophilia : the official journal of the World Federation of Hemophilia (01.05.2020)
Published in Haemophilia : the official journal of the World Federation of Hemophilia (01.05.2020)
Get full text
Journal Article
Efficacy and safety in patients with haemophilia A switching to octocog alfa (BAY 81–8973): Final results of the global real‐world study, TAURUS
Santoro, Cristina, Fuh, Beng, Le, Phu Quoc, Maes, Philip, Berrueco, Rubén, Mingot‐Castellano, Eva Maria, Mackensen, Sylvia, Tueckmantel, Claudia, Cabre‐Marquez, Jose Francisco, Wang, Michael
Published in European journal of haematology (01.01.2023)
Published in European journal of haematology (01.01.2023)
Get full text
Journal Article
Outcomes in children with hemophilia A with inhibitors: Results from a noninterventional study
Oldenburg, Johannes, Shima, Midori, Kruse‐Jarres, Rebecca, Santagostino, Elena, Mahlangu, Johnny, Lehle, Michaela, Selak Bienz, Nives, Chebon, Sammy, Asikanius, Elina, Trask, Peter, Mancuso, Maria Elisa, Jiménez‐Yuste, Victor, Mackensen, Sylvia, Levy, Gallia G.
Published in Pediatric blood & cancer (01.10.2020)
Published in Pediatric blood & cancer (01.10.2020)
Get full text
Journal Article
Cross-cultural assessment of the influence of the COVID-19 pandemic on the perceived mental health and medical experiences of persons with inherited bleeding disorders and their parents/guardians
von Mackensen, Sylvia, Santaella, Maria E, Nichols, Cynthia D, Khair, Kate, Lambing, Angela Y, Witkop, Michelle L
Published in Expert review of hematology (02.12.2023)
Published in Expert review of hematology (02.12.2023)
Get more information
Journal Article
BAY 81‐8973 prophylaxis and pharmacokinetics in haemophilia A: Interim results from the TAURUS study
Santoro, Cristina, Fuh, Beng, Le, Phu Quoc, Maes, Philip, Berrueco, Rubén, Mingot‐Castellano, Eva Maria, von Mackensen, Sylvia, Solms, Alexander, Wang, Michael
Published in European journal of haematology (01.08.2020)
Published in European journal of haematology (01.08.2020)
Get full text
Journal Article