Author: Alexandra Kucher

Characteristics and Self‐Reported Outcomes of Children and Adults with Severe Hemophilia A from Colombia

Vizcaya D, Torres L, Peñuela O, Forero MDR, Rivera M, Franco J-S. Characteristics and Self‐Reported Outcomes of Children and Adults with Severe Hemophilia A from Colombia. Abstract 060. Haemophilia. 2021;27(S2):18-181. https://doi.org/10.1111/hae.14236 Introduction Patient-reported outcomes are useful to optimize care of persons with hemophilia, but little is known of the differences between adult and children reported… Continue reading Characteristics and Self‐Reported Outcomes of Children and Adults with Severe Hemophilia A from Colombia

Assessment of quality of life of patients in Kyrgyzstan using the PROBE tool

Vizcaya D, Torres L, Peñuela O, Forero MDR, Rivera M, Franco J-S. Characteristics and Self‐Reported Outcomes of Children and Adults with Severe Hemophilia A from Colombia Tool. Abstract 060. Haemophilia. 2021;27(S2):18-181. https://doi.org/10.1111/hae.14236 Introduction In resource constrained countries such as the Kyrgyz Republic, there is very limited availability of clotting factor concentrates which has a determinantal… Continue reading Assessment of quality of life of patients in Kyrgyzstan using the PROBE tool

Incorporating Patient Reported Outcomes into Clinical Practice: a 360-degree Clinical Evaluation for Better Care and Treatment of People with Hemophilia through myWBDR and myPROBE

Youttananukorn T, Coffin D, Diop S, Hermans C, Konkle B, Lambert C, Noone D, O’Hara J, Pierce G, W Skinner M, Iorio A. Incorporating Patient Reported Outcomes into Clinical Practice: A 360-degree Clinical Evaluation for Better Care and Treatment of People with Hemophilia through myWBDR and myPROBE [abstract]. Res Pract Thromb Haemost. 2021;5(Suppl 2). https://abstracts.isth.org/abstract/incorporating-patient-reported-outcomes-into-clinical-practice-a-360-degree-clinical-evaluation-for-better-care-and-treatment-of-people-with-hemophilia-through-mywbdr-and-myprobe/.… Continue reading Incorporating Patient Reported Outcomes into Clinical Practice: a 360-degree Clinical Evaluation for Better Care and Treatment of People with Hemophilia through myWBDR and myPROBE

Feasibility of integrating PROBE (Patient Reported Outcomes, Burdens and Experiences) into a clinical care pathway to facilitate transformation to a Value-Based Health Care Model in hemophilia

Jackson S, Sheridan B, Gue D, Lyons S, Waines R, Ireland T, Pete D, Iorio A, Walsh L, Skinner M, Germini F. Feasibility of Integrating PROBE (Patient Reported Outcomes, Burdens and Experiences) into a Clinical Care Pathway to Facilitate Transformation to a Value-based Health Care Model in Hemophilia [abstract]. Res Pract Thromb Haemost. 2021;5(Suppl 2). https://abstracts.isth.org/abstract/feasibility-of-integrating-probe-patient-reported-outcomes-burdens-and-experiences-into-a-clinical-care-pathway-to-facilitate-transformation-to-a-value-based-health-care-model-in-hemophilia/… Continue reading Feasibility of integrating PROBE (Patient Reported Outcomes, Burdens and Experiences) into a clinical care pathway to facilitate transformation to a Value-Based Health Care Model in hemophilia

PROBE Results Show Continued Burden of Disease in Canadians with Hemophilia A and B

Page D, Kucher A, Geremini F. PP-72 (1160482) PROBE results show continued burden of disease in Canadians with severe haemophilia A and B. (2022), Abstracts. Haemophilia, 28: 5-97. https://doi.org/10.1111/hae.14537 Introduction Prophylaxis with recombinant factor concentrates has been the standard of care for severe hemophilia A and B in Canada since the early 1990s and has resulted… Continue reading PROBE Results Show Continued Burden of Disease in Canadians with Hemophilia A and B

Integration of the Mexican Registry of Coagulopathies (RMC) with PROBE

Kucher A, Gaitán C, Skinner M, Cruz M, Escobar A, Alfonso O, Iorio A, germini F, Parrish R, Sevestre M. LR-07.01 (1160466) Integration of the Mexican Registry of Coagulopathies (RMC) with PROBE. (2022), Abstracts. Haemophilia, 28: 5-97. https://doi.org/10.1111/hae.14537 Introduction Registro Mexicano de Coagulopatías (RMC) is a national registry app connected to the Federation of Hemophilia of the… Continue reading Integration of the Mexican Registry of Coagulopathies (RMC) with PROBE

Changing community needs for those with a Bleeding Disorder in Poland

Gajewski B, Sumera A, Kaczmarek R, Kucher A, Noone D, Page D, Skinner M. PP-75 (1160578) Changing community needs for those with a bleeding disorder in Poland. (2022), Abstracts. Haemophilia, 28: 5-97. https://doi.org/10.1111/hae.14537 Introduction Treatment and care have improved for those with a bleeding disorder(BD) in Poland.  There is a generation who is ageing and a… Continue reading Changing community needs for those with a Bleeding Disorder in Poland

Feasibility of integrating PROBE (Patient Reported Outcomes, Burdens and Experiences) into a clinical care pathway to facilitate transformation to a Value-Based Health Care Model in hemophilia

Jackson S, Sheridan B, Due D, Lyons S, Waines R, Ireland T, Pete D, Iorio A, Walsh L, Skinner M, Germini F. F. PP-60 (1160288) Feasibility of integrating PROBE (patient reported outcomes, burdens and experiences) into a clinical care pathway to facilitate transformation to a value-based health care model in haemophilia. (2022), Abstracts.Haemophilia, 28: 5-97.… Continue reading Feasibility of integrating PROBE (Patient Reported Outcomes, Burdens and Experiences) into a clinical care pathway to facilitate transformation to a Value-Based Health Care Model in hemophilia