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News
Value Ethics: Mapping Strategies for Value Assessment and Reimbursement of Targeted Genomic Therapies for Rare Diseases – A New CERA Working Group
CERA Working Groups are interdisciplinary teams that aim to deepen our understanding of emerging, high priority, or understudied ELSI issues using innovative approaches. CERA selects one or two…- genetic therapy
- cost of gene therapies
- working group
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Grant Abstract
Research, Treatment and Informed Consent in Gene Therapy
This project is designed to analyze the adequacy of the Belmont Report's distinction between research and treatment as a basis for informed consent policy especially as it pertains to gene…- behavioral /social science research tag
- Clinical Research
- Decision Making
- gene therapy
- health care policy
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Publication
The potential price and access implications of the cost-utility and budget impact methodologies applied by NICE in England and ICER in the US for a novel gene therapy in Parkinson's disease
Journal of market access & health policy -
Publication
Addressing the value of gene therapy and enhancing patient access to transformative treatments
Molecular Therapy -
Publication
Gene therapy of hemoglobinopathies: progress and future challenges
Human Molecular Genetics -
Publication
Regeneration X: The payer perspective on gene therapy
British Journal of Healthcare Management -
Grant Abstract
Consumer Perspectives on the Promise of CF Gene Therapy
In this study, the Education Development Center, Inc., in collaboration with the International Association of Cystic Fibrosis Adults (IACFA), Temple University, St. Vincent's Hospital, and…- Attitude
- behavioral /social science research tag
- Belief
- Clinical Research
- Cystic Fibrosis
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Video
ELSIcon2022 Paper: The 'Lived Experience' of Pediatric Gene Therapy - A Scoping Review
ELSIcon2022 • Paper • May 27, 2022 Laura Kimberly, Cara Hunt, Ryan Dieudonne, Alix Hall, Pat Furlong, Andrew McFadyen, Alison Bateman-House, Jennifer DeSante-Bertkau Little is known about patients…- Motivation to participate in research
- Gene therapy and gene editing
- Paper
- Pre-Recorded
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News
Ethical Issues in Pediatric Gene Therapy Clinical Trials
The Working Group on Pediatric Gene Therapy and Medical Ethics (PGTME) was created in 2019 to study ethical issues surrounding research in genetic interventions for pediatric populations. The group…- pediatric gene therapy
- Pediatric Research
- Informed Consent
- Research Ethics