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Journal Articles

Health-Related Quality of Life in Adults with Hemophilia B after Receiving Gene Therapy with Fidanacogene Elaparvovec

Sylvia von Mackensen, Jonathan M. Ducore, Lindsey A. George, Adam Giermasz, Catherine McGuinn, John E. J. Rasko, Ben J Samelson-Jones, Spencer K. Sullivan, Jerome M. Teitel, Amit Chhabra, Annie F. Fang, Amanda O'Brien, Frank Plonski, Jeremy Rupon, Lynne Smith, Ian Winburn

Blood (2023) 142 (Supplement 1): 3628.

https://doi.org/10.1182/blood-2023-179431

Published: 2023

Journal Articles

A Comparison of Health-Related Quality of Life, Pain and Functional Parameters between People with Hemophilia and People with Osteoarthritis - Preliminary Results of the Physio-FUN Study

Sylvia von Mackensen, Manuela Siebert, Marc Rosenthal, Ralf Kalinowski, Susan Halimeh

Blood (2023) 142 (Supplement 1): 7232.

https://doi.org/10.1182/blood-2023-179396

Published: 2023

Journal Articles

“Hermes” - Hemophilia Related Mental Illness: A Cross-Sectional, Multicenter Study in Switzerland

Francesca Schmitt, Laura Aliena Maier, Manuela Albisetti, Alice Trinchero, Lukas Graf, Heinz Hengartner, Pierre Fontana, Nicolas von der Weid, Katrin Scheinemann, Sylvia von Mackensen, Stefan Lerch, Corinna Reichl, Ines Mürner-Lavanchy, Johanna A. Kremer Hovinga, Michael Kaess, Mutlu Kartal-Kaess

Blood (2023) 142 (Supplement 1): 3741.

https://doi.org/10.1182/blood-2023-189771

Published: 2023

Journal Articles

Assessment of Haemophilia Patients' and Other Bleeding Disorders Needs of Psychosocial Support and Health Care Needs and Their Utilization in Haemophilia Treatment Centres (ILLUSTRATE Study)

Sylvia von Mackensen, Louis Gallmann, Manuela Siebert, Susan Halimeh

Blood (2023) 142 (Supplement 1): 5065.

https://doi.org/10.1182/blood-2023-187236

Published: 2023

Journal Articles

Changes in Health-Related Quality of Life, Pain and Functional Parameters in People with Hemophilia and People with Osteoarthritis - a Comparative Follow-up of Physiotherapeutic Training (Physio-FUN Study)

Susan Halimeh, Manuela Siebert, Marc Rosenthal, Ralf Kalinowski, Sylvia von Mackensen

Blood (2023) 142 (Supplement 1): 7301.

https://doi.org/10.1182/blood-2023-177553

Published: 2023

Journal Articles

Monitoring of Patient-Reported Outcomes in Patients with Bleeding Disorders to Assure Quality of Care: Results from a Single Outpatient Haemophilia Treatment Centre in Germany

Sylvia Von Mackensen, Susan Halimeh

Blood (2022) 140 (Supplement 1): 13065.

https://doi.org/10.1182/blood-2022-170160

Published: 2022

Journal Articles

Sustained Improvement in Health-Related Quality of Life in Patients with Hemophilia A with or without Inhibitors Treated with Fitusiran Prophylaxis

Viridiana Cano, José Bartelt-Hofer, Wenruo Hu, Shauna R. Andersson, Pronabesh Dasmahapatra, Sylvia Von Mackensen

Blood (2021) 138 (Supplement 1): 3197.

https://doi.org/10.1182/blood-2021-147286

Published: 2021

Journal Articles

Treatment of Women with Heavy Menstrual Bleeding with a Combination Therapy of Agnus Castus and Tranexamic Acid - Experiences of a German Single Centre

Susan Halimeh, Sylvia Von Mackensen, Lina Lourak, June Schwarzbach, Manuela Siebert

Blood (2021) 138 (Supplement 1): 1043.

https://doi.org/10.1182/blood-2021-153644

Published: 2021

Journal Articles

Clinical phenotype, fibrinogen supplementation, and health-related quality of life in patients with afibrinogenemia

Alessandro Casini, Sylvia von Mackensen, Cristina Santoro, Claudia Djambas Khayat, Meriem Belhani, Cecil Ross, Akbar Dorgalaleh, Arshi Naz, Ekrem Ünal, Magy Abdelwahab, Elise Dupuis Lozeron, Nathalie Trillot, Sophie Susen, Flora Peyvandi, Philippe de Moerloose

Blood (2021) 137 (22): 3127–3136.

https://doi.org/10.1182/blood.2020009472

Published: 2021

Includes: Supplemental data

Journal Articles

Fitusiran Treatment Impacts on Health-Related Quality of Life in Subjects with Hemophilia A and B with Inhibitors Assessed with the Haemophilia Quality of Life Questionnaire for Adults (Haem-A-QoL)

Sylvia Von Mackensen, Pratima Chowdary, Sarah Mangles, Qifeng Yu, Baisong Mei, Shauna R. Andersson, Pronabesh Dasmahapatra, MBBS, MPH

Blood (2020) 136 (Supplement 1): 23–24.

https://doi.org/10.1182/blood-2020-142266

Published: 2020

Journal Articles

How Caring for Toddlers and Young Children with Severe Haemophilia Impacts on Caregiver's Burden

Susan Halimeh, MD, Manuela Siebert, Sylvia Von Mackensen

Blood (2019) 134 (Supplement_1): 3461.

https://doi.org/10.1182/blood-2019-131185

Published: 2019

Journal Articles

Who Are the Type 2 Von Willebrand Disease Patients? Results from Interim Analysis of the French HRQoL Study: Wish-Qol .

Annie Borel-Derlon, MD PhD, Jenny Goudemand, MD PhD, Dominique Desprez, MD, Céline Falaise, Fabienne Genre Volot, MD, Laurent Ardillon, MD, Brigitte Pan-Petesch, MD, Catherine Chatelanaz, Catherine Doriat-Robin, Agnès Veyradier, Sr., MD PhD, Sylvia Von Mackensen

Blood (2018) 132 (Supplement 1): 2468.

https://doi.org/10.1182/blood-2018-99-113289

Published: 2018

Journal Articles

Detection of Early Deterioration of Joints in Children with Haemophilia — Results of the German Energy Study

Susan Halimeh, MD, Günther Kappert, Hannelore Rott, Manuela Siebert, Randy Moore, Sylvia Von Mackensen

Blood (2018) 132 (Supplement 1): 828.

https://doi.org/10.1182/blood-2018-99-113309

Published: 2018

Journal Articles

Gastrointestinal Bleeding and Angiodysplasia in Von Willebrand Disease: Results from the Ongoing French HRQoL Study: Wish-Qol

Annie Borel-Derlon, MD PhD, Dominique Desprez, MD, Fabienne Volot, MD, Herve Chambost, MD PhD, Sophie Bayard, MD, Catherine Chatelanaz, Catherine Doriat-Robin, Yves Gruel, MD PhD, Agnès Veyradier, Sr., MD PhD, Jenny Goudemand, MD PhD, Sylvia Von Mackensen, PhD

Blood (2017) 130 (Supplement 1): 4866.

https://doi.org/10.1182/blood.V130.Suppl_1.4866.4866

Published: 2017

Journal Articles

Spk-9001: Adeno-Associated Virus Mediated Gene Transfer for Hemophilia B - 1 Year Follow up and Impact of Baseline Characteristics on Transgene-Derived Factor IX Activity and Persistence

Blood (2017) 130 (Supplement 1): 601.

https://doi.org/10.1182/blood.V130.Suppl_1.601.601

Published: 2017

Journal Articles

Wish-Qol Study - Assessment of Health-Related Quality of Life (HRQoL) and Health-Economic Aspects in Patients with Von Willebrand Disease (VWD) in France: Results of the Women Cohort

Annie Borel-Derlon, MD PhD, Jenny Goudemand, MD PhD, Dominique Desprez, MD, Fabienne Volot, MD, Yves Gruel, MD, Sophie Bayard, MD, Catherine Chatelanaz, Catherine Doriat-Robin, Agnes Veyradier, MD PhD, Edith Fressinaud, MD, Sylvia von Mackensen, PhD

Blood (2016) 128 (22): 1395.

https://doi.org/10.1182/blood.V128.22.1395.1395

Published: 2016

Journal Articles

Expectations and Concerns Towards New Extended Half-Life (EHL) Products - Results of Surveys Among Haemophilia Patients from the Dach Region

Sylvia von Mackensen, PhD, Werner Kalnins, Hostettler Lino, Krucker Joerg, Manuela Albisetti, MD, Josef Weiss, Ingrid Pabinger, Prof, Johannes Oldenburg, Prof

Blood (2016) 128 (22): 4740.

https://doi.org/10.1182/blood.V128.22.4740.4740

Published: 2016

Journal Articles

Perception of Actual Factor Concentrates and Expectations Towards Future Treatment with New Long-Lasting Products - Results of a Survey Among Haemophilia Patients in Germany

Sylvia von Mackensen, PhD, Struck Heinrich, Werner Kalnins, Johannes Oldenburg

Blood (2015) 126 (23): 4449.

https://doi.org/10.1182/blood.V126.23.4449.4449

Published: 2015

Journal Articles

Perception of Actual Factor Concentrates and Expectations Towards Future Treatment with New Long-Lasting Products - Results of a Survey Among Haemophilia Patients in Germany - Analysis of Open Questions

Werner Kalnins, Wolfgang A. Miesbach, MD PhD, Sylvia von Mackensen, PhD

Blood (2015) 126 (23): 3269.

https://doi.org/10.1182/blood.V126.23.3269.3269

Published: 2015

Journal Articles

Self- and Parent/Proxies-Reported Health-Related Quality Of Life In Children and Adolescents With Bleeding Disorders: Cross Sectional Investigation and Comparison With Healthy Siblings and Healthy Peers

Neuner Bruno, Sylvia von Mackensen, PhD, Susan Halimeh, MD, Susanne Holzhauer, MD, Robert Klamroth, MD, PhD, Karin Kurnik, MD, Anne Kruempel, MD, Michael Fruewald, Henning Krampe, Ulrike Nowak-Goettl

Blood (2013) 122 (21): 4773.

https://doi.org/10.1182/blood.V122.21.4773.4773

Published: 2013

NARROW

Health-Related Quality of Life in Adults with Hemophilia B after Receiving Gene Therapy with Fidanacogene Elaparvovec

A Comparison of Health-Related Quality of Life, Pain and Functional Parameters between People with Hemophilia and People with Osteoarthritis - Preliminary Results of the Physio-FUN Study

“Hermes” - Hemophilia Related Mental Illness: A Cross-Sectional, Multicenter Study in Switzerland

Assessment of Haemophilia Patients' and Other Bleeding Disorders Needs of Psychosocial Support and Health Care Needs and Their Utilization in Haemophilia Treatment Centres (ILLUSTRATE Study)

Changes in Health-Related Quality of Life, Pain and Functional Parameters in People with Hemophilia and People with Osteoarthritis - a Comparative Follow-up of Physiotherapeutic Training (Physio-FUN Study)

Monitoring of Patient-Reported Outcomes in Patients with Bleeding Disorders to Assure Quality of Care: Results from a Single Outpatient Haemophilia Treatment Centre in Germany

Sustained Improvement in Health-Related Quality of Life in Patients with Hemophilia A with or without Inhibitors Treated with Fitusiran Prophylaxis

Treatment of Women with Heavy Menstrual Bleeding with a Combination Therapy of Agnus Castus and Tranexamic Acid - Experiences of a German Single Centre

Clinical phenotype, fibrinogen supplementation, and health-related quality of life in patients with afibrinogenemia

Fitusiran Treatment Impacts on Health-Related Quality of Life in Subjects with Hemophilia A and B with Inhibitors Assessed with the Haemophilia Quality of Life Questionnaire for Adults (Haem-A-QoL)

How Caring for Toddlers and Young Children with Severe Haemophilia Impacts on Caregiver's Burden

Who Are the Type 2 Von Willebrand Disease Patients? Results from Interim Analysis of the French HRQoL Study: Wish-Qol .

Detection of Early Deterioration of Joints in Children with Haemophilia — Results of the German Energy Study

Gastrointestinal Bleeding and Angiodysplasia in Von Willebrand Disease: Results from the Ongoing French HRQoL Study: Wish-Qol

Spk-9001: Adeno-Associated Virus Mediated Gene Transfer for Hemophilia B - 1 Year Follow up and Impact of Baseline Characteristics on Transgene-Derived Factor IX Activity and Persistence

Wish-Qol Study - Assessment of Health-Related Quality of Life (HRQoL) and Health-Economic Aspects in Patients with Von Willebrand Disease (VWD) in France: Results of the Women Cohort

Expectations and Concerns Towards New Extended Half-Life (EHL) Products - Results of Surveys Among Haemophilia Patients from the Dach Region

Perception of Actual Factor Concentrates and Expectations Towards Future Treatment with New Long-Lasting Products - Results of a Survey Among Haemophilia Patients in Germany

Perception of Actual Factor Concentrates and Expectations Towards Future Treatment with New Long-Lasting Products - Results of a Survey Among Haemophilia Patients in Germany - Analysis of Open Questions

Self- and Parent/Proxies-Reported Health-Related Quality Of Life In Children and Adolescents With Bleeding Disorders: Cross Sectional Investigation and Comparison With Healthy Siblings and Healthy Peers

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American Society of Hematology

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ASH Publications

American Society of Hematology

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