(PDF) The Hemophilia Gene Therapy Patient Journey: Questions and
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The Hemophilia Gene Therapy Patient Journey: Questions and Answers for Shared Decision-Making
The CHC defined 5 key stages in the hemophilia gene therapy patient journey: pre-gene therapy (information-seeking and decision-making), treatment initiation, short- and long-term post-gene therapy follow-up. PWH will have different questions and concerns at each stage of their journey, which should be discussed with their HCP to aid decision ...
Global Hemophilia Survey: Patient Experiences & Needs
Global Hemophilia Survey Captures the Voice of Patients, Caregivers, and Providers. Published on: October 6, 2023. Key data and insights uncover unmet needs and opportunities to advance standards of care for people living with hemophilia. Hemophilia is a rare, lifelong condition in which the ability of a person's blood to clot properly is ...
Full article: The Hemophilia Gene Therapy Patient Journey: Questions
The Patient Journey: Key Stages and Aims. As an initial step in developing the Q&A resource, the CHC undertook defining the patient journey through gene therapy for hemophilia. The CHC has categorized 5 pillars of the patient decision-making journey in the current treatment landscape: Pre-gene therapy information seeking
Hemophilia
Hemophilia. Hemophilia is a genetic disease that prevents blood from clotting properly leading to prolonged internal and external bleeding. Learn how gene therapy works to slow or stop disease progression by instructing cells to produce the missing clotting factor, along with information on approved therapies and clinical trials. HEMGENIX is an ...
Newly Diagnosed: Taking the First Step on Your Journey
Diagnosis. If a patient has a bleeding problem, a physician first inquires about the medical history of the family. Hemophilia testing includes a physical exam, blood screening tests, and clotting factor tests. Blood screening tests are necessary to determine the delay in blood clot formation. Clotting factor tests, also called factor assays ...
Gene Therapy in Hemophilia: A Transformational Patient Experience
Currently, only one hemophilia A GT product (valoctocogene roxaparvovec) is available, marketed since 2022 in the European Union. 11 The GT patient journey has recently been described based on roundtable meetings between patients and healthcare professionals (HCPs) and can be broadly split into 5 stages: (1) pre-GT information seeking, (2 ...
Educational needs of patients, families, and healthcare professionals
Unmet needs throughout the patient journey, potential next steps, and educational requirements for PWH. A Current unmet needs throughout the gene therapy for haemophilia journey and potential starting points regarding education, psychological support, and guidance. Time periods are indicated by a light grey background; unmet needs are applicable to all time periods across which they span.
The Hemophilia Gene Therapy Patient Journey: Questions and ...
Patient groups were also consulted during the development of this tool. Results: The CHC defined 5 key stages in the hemophilia gene therapy patient journey: pre-gene therapy (information-seeking and decision-making), treatment initiation, short- and long-term post-gene therapy follow-up. PWH will have different questions and concerns at each ...
The journey of gene therapy in haemophilia
The patient journey in haemophilia gene therapy is complex and multifaceted, presenting challenges to the hub and spoke model of care. Understanding these from the patient viewpoint will help ensure people with haemophilia receive the information, guidance and support they need throughout their gene therapy journey.
Paper Features Q&A Resource on Shared Decision Making and Gene Therapy
Each of the questions were subsequently assigned to the five stages of the patient "decision making journey.". These included 1) Pre-gene therapy information seeking 2) Pre-gene therapy decision making 3) Treat initiation 4) Short-term post-gene therapy follow up (less than one year since receiving gene therapy) 5) Long-term gene therapy ...
The Hemophilia Gene Therapy Patient Journey: Questions and ...
Patient groups were also consulted during the development of this tool.Results: The CHC defined 5 key stages in the hemophilia gene therapy patient journey: pre-gene therapy (information-seeking and decision-making), treatment initiation, short- and long-term post-gene therapy follow-up. PWH will have different questions and concerns at each ...
Real Stories from People Living with Hemophilia
Renita's son Edwin was born with severe hemophilia. Read her story to find out why she is a champion for the bleeding disorders community. Read these personal stories from people living with hemophilia. The complications of hemophilia can be challenging. However, with treatment, people with hemophilia can manage their bleeding symptoms.
[PDF] The Hemophilia Gene Therapy Patient Journey: Questions and
The resulting patient journey infographic and Q&A resource has been developed for HCPs and PWH to provide a novel and practical roadmap of key issues and considerations throughout all stages of the hemophilia gene therapy patient journey. Purpose The anticipated emergence of hemophilia gene therapy will present people with hemophilia (PWH) and treating clinicians with increasingly complex ...
Educational needs of patients, families, and healthcare ...
Educational needs of patients, families, and healthcare professionals to support the patient journey in haemophilia gene therapy in the UK Orphanet J Rare Dis. 2023 Nov 25;18(1):366. doi: 10.1186/s13023-023-02977-y. ... Hemophilia A* / therapy Humans United Kingdom ...
(PDF) The Hemophilia Gene Therapy Patient Journey: Questions and
Herein, we provide a new, interactive, question and answer (Q&A) PDF resource (see Supplementary Materials) for. shared decision-making along the patient journey. The Unmet Need in Hemophilia ...
PDF The Hemophilia Treatment Journey: To Factor and Beyond!
Conclusions. Hemophilia therapy is rapidly evolving. Factor replacement is still the mainstay of treatment, though changing. Non-factor products playing an ever-growing role in treatment. Gene therapy is right around the corner. Kansas City HTC. ~800 pediatric and adult patients.
Epidemiology, patient journey and unmet needs related to hemophilia in
Introduction. Brazil is one of the countries with the largest population of people with hemophilia (PwH) worldwide. In this scoping review, we aim to investigate the Brazilian context for hemophilia regarding three predefined concepts: (i) clinical-epidemiological profile, (ii) burden of disease and (iii) patient journey and unmet needs.
One Size Does Not Fit All: Individualized Therapy
What they did was they did pharmacokinetics in 34 severe hemophilia A patients, and what they showed was that an individual dose to achieve a trough of 1% for each patient—what it was. They then determined what it required to prevent a bleed and what the optimal prophylaxis dose was. And in these 34 patients the median factor VIII required to ...
One Family's Hemophilia Journey
One Family's Hemophilia Journey. This microdocumentary shares the moving story of a family with two young sons who have severe hemophilia, giving us a glimpse into their history and treatment routine. Hemophilia is a rare bleeding disorder in which the body is unable to properly create a blood clot. Beyond external bleeding, like a cut ...
Navigating the Joint Health Journey for Patients With Hemophilia: How
Target Audience and Goal Statement. This activity is intended for hematologists, pediatricians, and pediatric hematologists. The goal of this activity is that learners will be better able to understand the importance of joint health in patients with hemophilia and their ability to optimally navigate the care of these patients as part of the interprofessional team.
Epidemiology, patient journey and unmet needs related to hemophilia in
Introduction: Brazil is one of the countries with the largest population of people with hemophilia (PwH) worldwide. In this scoping review, we aim to investigate the Brazilian context for hemophilia regarding three predefined concepts: (i) clinical-epidemiological profile, (ii) burden of disease and (iii) patient journey and unmet needs.
The Hemophilia Gene Therapy Patient Journey: Questions and Answers for
All members of the Bayer Global and European Patient Councils groups are PWH or a caregiver of a person with hemophilia. Members of the Bayer Hemophilia Council include Bayer employees with hemophilia. The resultant patient journey roadmap and Q&A resource were shared with the entire CHC for feedback.
Health care costs and resource use of managing hemophilia A: A targeted
RESULTS: A total of 40 publications, including 17 full-text papers, 21 abstracts, and 2 Institute for Clinical and Economic Review reports, met eligibility criteria. Total annual health care costs per patient ranged from $213,874 to $869,940 and are mainly driven by the cost and intensity of prophylaxis with FVIII replacement concentrates ...
IMAGES
VIDEO
COMMENTS
The CHC defined 5 key stages in the hemophilia gene therapy patient journey: pre-gene therapy (information-seeking and decision-making), treatment initiation, short- and long-term post-gene therapy follow-up. PWH will have different questions and concerns at each stage of their journey, which should be discussed with their HCP to aid decision ...
Global Hemophilia Survey Captures the Voice of Patients, Caregivers, and Providers. Published on: October 6, 2023. Key data and insights uncover unmet needs and opportunities to advance standards of care for people living with hemophilia. Hemophilia is a rare, lifelong condition in which the ability of a person's blood to clot properly is ...
The Patient Journey: Key Stages and Aims. As an initial step in developing the Q&A resource, the CHC undertook defining the patient journey through gene therapy for hemophilia. The CHC has categorized 5 pillars of the patient decision-making journey in the current treatment landscape: Pre-gene therapy information seeking
Hemophilia. Hemophilia is a genetic disease that prevents blood from clotting properly leading to prolonged internal and external bleeding. Learn how gene therapy works to slow or stop disease progression by instructing cells to produce the missing clotting factor, along with information on approved therapies and clinical trials. HEMGENIX is an ...
Diagnosis. If a patient has a bleeding problem, a physician first inquires about the medical history of the family. Hemophilia testing includes a physical exam, blood screening tests, and clotting factor tests. Blood screening tests are necessary to determine the delay in blood clot formation. Clotting factor tests, also called factor assays ...
Currently, only one hemophilia A GT product (valoctocogene roxaparvovec) is available, marketed since 2022 in the European Union. 11 The GT patient journey has recently been described based on roundtable meetings between patients and healthcare professionals (HCPs) and can be broadly split into 5 stages: (1) pre-GT information seeking, (2 ...
Unmet needs throughout the patient journey, potential next steps, and educational requirements for PWH. A Current unmet needs throughout the gene therapy for haemophilia journey and potential starting points regarding education, psychological support, and guidance. Time periods are indicated by a light grey background; unmet needs are applicable to all time periods across which they span.
Patient groups were also consulted during the development of this tool. Results: The CHC defined 5 key stages in the hemophilia gene therapy patient journey: pre-gene therapy (information-seeking and decision-making), treatment initiation, short- and long-term post-gene therapy follow-up. PWH will have different questions and concerns at each ...
The patient journey in haemophilia gene therapy is complex and multifaceted, presenting challenges to the hub and spoke model of care. Understanding these from the patient viewpoint will help ensure people with haemophilia receive the information, guidance and support they need throughout their gene therapy journey.
Each of the questions were subsequently assigned to the five stages of the patient "decision making journey.". These included 1) Pre-gene therapy information seeking 2) Pre-gene therapy decision making 3) Treat initiation 4) Short-term post-gene therapy follow up (less than one year since receiving gene therapy) 5) Long-term gene therapy ...
Patient groups were also consulted during the development of this tool.Results: The CHC defined 5 key stages in the hemophilia gene therapy patient journey: pre-gene therapy (information-seeking and decision-making), treatment initiation, short- and long-term post-gene therapy follow-up. PWH will have different questions and concerns at each ...
Renita's son Edwin was born with severe hemophilia. Read her story to find out why she is a champion for the bleeding disorders community. Read these personal stories from people living with hemophilia. The complications of hemophilia can be challenging. However, with treatment, people with hemophilia can manage their bleeding symptoms.
The resulting patient journey infographic and Q&A resource has been developed for HCPs and PWH to provide a novel and practical roadmap of key issues and considerations throughout all stages of the hemophilia gene therapy patient journey. Purpose The anticipated emergence of hemophilia gene therapy will present people with hemophilia (PWH) and treating clinicians with increasingly complex ...
Educational needs of patients, families, and healthcare professionals to support the patient journey in haemophilia gene therapy in the UK Orphanet J Rare Dis. 2023 Nov 25;18(1):366. doi: 10.1186/s13023-023-02977-y. ... Hemophilia A* / therapy Humans United Kingdom ...
Herein, we provide a new, interactive, question and answer (Q&A) PDF resource (see Supplementary Materials) for. shared decision-making along the patient journey. The Unmet Need in Hemophilia ...
Conclusions. Hemophilia therapy is rapidly evolving. Factor replacement is still the mainstay of treatment, though changing. Non-factor products playing an ever-growing role in treatment. Gene therapy is right around the corner. Kansas City HTC. ~800 pediatric and adult patients.
Introduction. Brazil is one of the countries with the largest population of people with hemophilia (PwH) worldwide. In this scoping review, we aim to investigate the Brazilian context for hemophilia regarding three predefined concepts: (i) clinical-epidemiological profile, (ii) burden of disease and (iii) patient journey and unmet needs.
What they did was they did pharmacokinetics in 34 severe hemophilia A patients, and what they showed was that an individual dose to achieve a trough of 1% for each patient—what it was. They then determined what it required to prevent a bleed and what the optimal prophylaxis dose was. And in these 34 patients the median factor VIII required to ...
One Family's Hemophilia Journey. This microdocumentary shares the moving story of a family with two young sons who have severe hemophilia, giving us a glimpse into their history and treatment routine. Hemophilia is a rare bleeding disorder in which the body is unable to properly create a blood clot. Beyond external bleeding, like a cut ...
Target Audience and Goal Statement. This activity is intended for hematologists, pediatricians, and pediatric hematologists. The goal of this activity is that learners will be better able to understand the importance of joint health in patients with hemophilia and their ability to optimally navigate the care of these patients as part of the interprofessional team.
Introduction: Brazil is one of the countries with the largest population of people with hemophilia (PwH) worldwide. In this scoping review, we aim to investigate the Brazilian context for hemophilia regarding three predefined concepts: (i) clinical-epidemiological profile, (ii) burden of disease and (iii) patient journey and unmet needs.
All members of the Bayer Global and European Patient Councils groups are PWH or a caregiver of a person with hemophilia. Members of the Bayer Hemophilia Council include Bayer employees with hemophilia. The resultant patient journey roadmap and Q&A resource were shared with the entire CHC for feedback.
RESULTS: A total of 40 publications, including 17 full-text papers, 21 abstracts, and 2 Institute for Clinical and Economic Review reports, met eligibility criteria. Total annual health care costs per patient ranged from $213,874 to $869,940 and are mainly driven by the cost and intensity of prophylaxis with FVIII replacement concentrates ...