The Situation
Phenylketonuria (PKU) is a rare genetic condition that causes an amino acid called phenylalanine (PHE) to build up in the body causing irreversible brain damage and behavioral problems.
50% of patients diagnosed stop visiting a metabolic clinic into adulthood. Without adequate care this population is at high risk for negative psychological and neurocognitive consequences.
The Solution
HCPs and patients were gathered to participate in focus groups to discuss key insights and develop best practice strategies for successfully managing PKU adult patients with BRAND. These best practices were then widely distributed via a multifaceted educational platform.
Co-created resources:
- SOPs for Management of PKU
- Peer Educating Guides
- Peer Educational Content
- Patient Coaching Tools
The Results
In a post-launch satisfaction survey, participants rated the content at 90%.