Improving the quality of and access to genomic testing for suspected genetic conditions can transform lives of affected families and communities. The new NYCKidSeq program empowers patients and their families to receive genomic testing, get results they can understand, and receive and interact with their genomic information. We hope to develop best practices in providing personalized medicine for today's children and for future generations.
The NYCKidSeq program has four main goals:
- We will evaluate whether genome sequencing will lead to improved medical care and health for children with primary immunodeficiencies, cardiovascular disorders, and neurologic conditions, as compared to standard genetic diagnostic tests that pediatricians use today.
- We will engage with children and their families, local communities, medical teams, and hospital administrators to understand the impact of introducing genome sequencing in clinical care.
- We will develop web-based tools that are both interactive and educational to help patients, families and pediatricians to receive genetic information that they can understand and use.
- We will determine if access to genetic testing can be improved through these new web-based communication tools.