NJACE Centralized Data Repository
Please note: All information gathered for this autism data repository will be held confidential and anonymous. No subject’s identity will be revealed throughout this process.
Our state of NJ has:
• the highest incidence of autism in the US
• the highest support from our Governor’s Council for the Medical Research and Treatments of Autism
The past 20 years have been very fruitful. Researchers have generated new scientific data across many layers of knowledge by:
• Interviewing patients
• Observing and measuring patient behavior
• Studying patient exposure to environmental agents
• Profiling patient microbiomes (gut/immunology)
• Codifying patient genetic makeup
However, the data is disconnected, and resides in different labs and hospitals. So our ability to comprehensively analyze it, and generate innovative insights is limited. In order to connect the dots, we need the ability to pull data from all levels of knowledge and integrate it into The New Jersey Smart Health Network.
The network will allow us to:
• Integrate scientific facts across all layers
• Personalize treatment and move away from a one-size-fits-all model
• Consider changes in needs as each person ages and transitions into new life cycles
• Connect people with similar needs to existing services
• Reveal gaps in services for people in similar groups
• Unveil new avenues for treatments using metrics that accelerate their effectiveness
Let’s connect the dots through data sharing and integration towards personalized medicine.