Project FIND-OUT Collaborators

The overall goal of Project FIND-OUT is to facilitate early and accurate genetic diagnosis of rare genetic neurodevelopmental disorders in infants between the ages of 3-12 months.

Project FIND-OUT Objectives:

Project FIND-OUT aims to provide whole genome sequencing to 1,000 infants who are between the ages of 3 and 12 months. The specific research objectives are:

Determine the earliest time point when infants with RGNDs can be identified based on symptoms (e.g., 3 months, 6 months, 9 months vs. 12 months of age)
Implement screening criteria and determine the diagnostic yield of RGND in these patients (by age range) and how the diagnostic yield varies by patient characteristic
Identify which conditions can be diagnosed at each time point
Determine the most effective method for disseminating screening criteria by age to healthcare professionals
Measure the impact of use of screening criteria on RGND diagnosis and patient outcomes
For each age range, develop an algorithm for which patients should receive whole genome sequencing
Demonstrate how whole genome sequencing can be provided equitably

How Can I Contribute To Project FIND-OUT?

We want to ensure that the infants in Project FIND-OUT are representative of the US population in terms of ethnicity and socioeconomic status, so are actively seeking collaborators interested in working with the Project FIND-OUT team to provide outreach to black and brown families and families who have barriers to accessing healthcare.
We are looking for experts to participate in our expert panel. The panel will provide critical guidance to the project at pre-specified points during the project (e.g., once data from first 100 patients are available, once we have data on primary endpoint from all 1000 patients, once data collection is complete).
We are looking for sponsors willing to help support the study financially.
We welcome other collaborators who have a shared interest in increasing access to genomic testing and reducing the time to diagnosis in rare disease.

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Project FIND-OUT Collaborators

Project FIND-OUT Objectives:

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