This Project Grant award, valued at $174,302.00 and provided by the National Human Genome Research Institute (NHGRI) under the Human Genome Research program (CFDA 93.172), supports research to characterize how adults with childhood-onset genetic conditions, such as cystic fibrosis, conceptualize and plan for their futures amid evolving disease prognoses and emerging therapies. The award recipient, The Trustees of the University of Pennsylvania, will conduct qualitative interviews with adult cystic fibrosis patients and their clinicians to understand patient perspectives on future planning and identify clinical opportunities to better support these individuals. The project aims to develop a conceptual model that integrates insights from these interviews with disability studies theory, and explore the relevance of the model for adults with other childhood-onset genetic conditions. The award period runs from March 7, 2025 to February 28, 2030.
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