Rose F. Kennedy Intellectual and Developmental Disabilities Research Center

Operation IDD Gene Team

As part of our Children’s Brain Initiative, the Rose F. Kennedy Intellectual and Developmental Disabilities Research Center announces the creation of a new program known as “Operation IDD Gene Team”.

Using WES and WGS made available through the recently funded program, NYCKidSeq, we will screen children seen at CHAM and CERC with moderate to severe IDD without known cause, IDD with strong family history, or syndromic IDD.

Gene discoveries will be tracked with the goal of building basic scientist - clinical investigator collaboratives (“expert panels”) designed to advance understanding of how alterations in the discovered genes/proteins are linked to IDD, and when applicable what therapies might be tested.  A variety of creative funding means will be utilized to facilitate pilot research designed to lead to larger grants submitted to the NIH.

We will organize information-sharing sessions (“tutorials”) between the expert panels and the parents/care givers in order to help them understand what is known about the involved gene and its protein and how research advances could best be achieved.

We will hold Operation IDD-Gene Team monthly “rounds” on the Montefiore/Einstein campuses, inviting basic scientists and clinicians, postdocs, fellows, students, and as appropriate, parents/patients to attend.

Genes we are currently tracking include the following:
AIDA-1, CACNA1A, EPG5, GRIN2B, HNRNPH2, NAV3, PCDH19, PPM1D, SHANK2, SLC17A5 and SLC29A3.
Please watch this space for additional details.

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