Patient-relevant health outcomes for von Willebrand disease, platelet function disorders, and rare bleeding disorders: a Delphi study

por van Hoorn, Evelien S., Lingsma, Hester F., Cnossen, Marjon H., Gouw, Samantha C.
Publicado 2023

Patient-Centered Digital Health Records and Their Effects on Health Outcomes: Systematic Review

por Brands, Martijn R, Gouw, Samantha C, Beestrum, Molly, Cronin, Robert M, Fijnvandraat, Karin, Badawy, Sherif M
Publicado 2022

Measurement of joint health in persons with haemophilia: A systematic review of the measurement properties of haemophilia‐specific instruments

por Gouw, Samantha C., Timmer, Merel A., Srivastava, Alok, de Kleijn, Piet, Hilliard, Pamela, Peters, Marjolein, Blanchette, Victor, Fischer, Kathelijn
Publicado 2018

Prevalence and Incidence of Non-neutralizing Antibodies in Congenital Hemophilia A— A Systematic Review and Meta-Analysis

por Abdi, A., Bordbar, M. R., Hassan, S., Rosendaal, F. R., van der Bom, J. G., Voorberg, J., Fijnvandraat, K., Gouw, S. C.
Publicado 2020

Myocardial infarction due to thrombotic occlusion despite anticoagulation in Kawasaki disease – a case report

por van Stijn, Diana, Schoenmaker, Nikki J., Planken, R. Nils, Koolbergen, Dave R., Gouw, Samantha C., Kuijpers, Taco W., Blom, Nico A., Kuipers, Irene M.
Publicado 2022

Adherence to prophylaxis and its association with activation of self‐management and treatment satisfaction

por Hoefnagels, Johanna Wilhelmina, Schrijvers, Liesbeth Hélène, Leebeek, Frank W. G., Eikenboom, Jeroen, Schols, Saskia E. M., Smit, Cees, Schutgens, Roger E. G., Gouw, Samantha C., Fischer, Kathelijn
Publicado 2021

Validation of the pedHAL(short) and HAL(short) in Dutch children and adults with haemophilia

por Kuijlaars, Isolde A. R., van der Net, Janjaap, van Vulpen, Lize F. D., Driessens, Mariette H. E., Schols, Saskia E. M., Tan, Melanie, Gouw, Samantha C., Fischer, Kathelijn
Publicado 2022

Determinants of successful immune tolerance induction in hemophilia A: systematic review and meta-analysis

por Oomen, Ilja, Camelo, Ricardo M., Rezende, Suely Meireles, Voorberg, Jan, Mancuso, Maria Elisa, Oldenburg, Johannes, Carcao, Manuel, Matino, Davide, Lillicrap, David, Fischer, Kathelijn, Fijnvandraat, Karin, Gouw, Samantha C.
Publicado 2022

Patient Perspectives on Novel Treatments in Haemophilia: A Qualitative Study

por van Balen, Erna C., Wesselo, Marjolein L., Baker, Bridget L., Westerman, Marjan J., Coppens, Michiel, Smit, Cees, Driessens, Mariëtte H. E., Leebeek, Frank W. G., van der Bom, Johanna G., Gouw, Samantha C.
Publicado 2019

Patient‐reported outcomes in autosomal inherited bleeding disorders: A systematic literature review

por van Hoorn, Evelien S., Houwing, Maite E., Al Arashi, Wala, Leebeek, Frank W. G., Hazelzet, Jan A., Gouw, Samantha C., Schutgens, Roger E. G., Schols, Saskia E. M., Lingsma, Hester F., Cnossen, Marjon H.
Publicado 2022

Joint status of patients with nonsevere hemophilia A

por Zwagemaker, Anne‐Fleur, Kloosterman, Fabienne R., Hemke, Robert, Gouw, Samantha C., Coppens, Michiel, Romano, Lorenzo G. R., Kruip, Marieke J. H. A., Cnossen, Marjon H., Leebeek, Frank W. G., Hutten, Barbara A., Maas, Mario, Fijnvandraat, Karin
Publicado 2022

Patients’ and health care providers’ perspectives on quality of hemophilia care in the Netherlands: a questionnaire and interview study

por Brands, Martijn R., Haverman, Lotte, Muis, Jelmer J., Driessens, Mariëtte H.E., van der Meer, Felix J.M., Goedhart, Geertje, Meijer, Stephan, de Jong, Marianne, van der Bom, Johanna G., Cnossen, Marjon H., Fijnvandraat, Karin, Gouw, Samantha C.
Publicado 2023

Generic PROMIS item banks in adults with hemophilia for patient‐reported outcome assessment: Feasibility, measurement properties, and relevance

por Kuijlaars, Isolde A. R., Teela, Lorynn, van Vulpen, Lize F. D., Timmer, Merel A., Coppens, Michiel, Gouw, Samantha C., Peters, Marjolein, Kruip, Marieke J. H. A., Cnossen, Marjon H., Muis, Jelmer J., van Hoorn, Evelien S., Haverman, Lotte, Fischer, Kathelijn
Publicado 2021

Similar sports participation as the general population in Dutch persons with haemophilia; results from a nationwide study

por Versloot, Olav, van Balen, Erna C., Hassan, Shermarke, Schols, Saskia E.M., Leebeek, Frank W.G., Eikenboom, Jeroen, Coppens, Michiel, van Vulpen, Lize F.D., Smit, Cees, Driessens, Mariëtte H.E., van der Net, Janjaap, Gouw, Samantha C., Fischer, Kathelijn
Publicado 2021

Desmopressin for bleeding in non‐severe hemophilia A: Suboptimal use in a real‐world setting

por Zwagemaker, Anne‐Fleur, Kloosterman, Fabienne R., Coppens, Michiel, Gouw, Samantha C., Boyce, Sara, Bagot, Catherine N., Beckers, Erik A. M., Brons, Paul, Castaman, Giancarlo, Eikenboom, Jeroen, Jackson, Shannon, Kruip, Marieke J. H. A., Leebeek, Frank W. G., Meijer, Karina, Nieuwenhuizen, Laurens, Pabinger, Ingrid, Fijnvandraat, Karin
Publicado 2022

In patients with hemophilia, a decreased thrombin generation profile is associated with a severe bleeding phenotype

por Verhagen, Marieke J.A., van Heerde, Waander L., van der Bom, Johanna G., Beckers, Erik A.M., Blijlevens, Nicole M.A., Coppens, Michiel, Gouw, Samantha C., Jansen, Joop H., Leebeek, Frank W.G., van Vulpen, Lize F.D., Meijer, Daniëlle, Schols, Saskia E.M.
Publicado 2023

Psychometrics of the patient-reported outcomes measurement information system measures in hemophilia: the applicability of the pediatric item banks

por Teela, Lorynn, Luijten, Michiel A.J., Kuijlaars, Isolde A.R., van Gastel, Tessa C.M., van Hoorn, Evelien S., Gouw, Samantha C., Fijnvandraat, Karin C.J., Fischer, Kathelijn, Cnossen, Marjon H., Andeweg, Sasja, van der Velden – van ‘t Hoff, Carolien, Liem, Corinne, Jansen-Zijlstra, Margreet E., Peters, Marjolein, Haverman, Lotte
Publicado 2023

The factor VIII treatment history of non‐severe hemophilia A

por Abdi, Amal, Kloosterman, Fabienne R., Eckhardt, Corien L., Male, Christoph, Castaman, Giancarlo, Fischer, Kathelijn, Beckers, Erik A. M., Kruip, Marieke J. H. A., Peerlinck, Kathelijne, Mancuso, Maria Elisa, Santoro, Cristina, Hay, Charles R., Platokouki, Helen, van der Bom, Johanna G., Gouw, Samantha C., Fijnvandraat, Karin, Hart, Dan P.
Publicado 2020

The bleeding phenotype in people with nonsevere hemophilia

por Kloosterman, Fabienne R., Zwagemaker, Anne-Fleur, Bagot, Catherine N., Beckers, Erik A. M., Castaman, Giancarlo, Cnossen, Marjon H., Collins, Peter W., Hay, Charles, Hof, Michel, Laros-van Gorkom, Britta, Leebeek, Frank W. G., Male, Christoph, Meijer, Karina, Pabinger, Ingrid, Shapiro, Susan, Coppens, Michiel, Fijnvandraat, Karin, Gouw,, Samantha C.
Publicado 2022

Patient‐relevant health outcomes for hemophilia care: Development of an international standard outcomes set

por van Balen, Erna C., O'Mahony, Brian, Cnossen, Marjon H., Dolan, Gerard, Blanchette, Victor S., Fischer, Kathelijn, Gue, Deborah, O'Hara, Jamie, Iorio, Alfonso, Jackson, Shannon, Konkle, Barbara A., Nugent, Diane J., Coffin, Donna, Skinner, Mark W., Smit, Cees, Srivastava, Alok, van Eenennaam, Fred, van der Bom, Johanna G., Gouw, Samantha C.
Publicado 2021