Dr. Hessl is leading a collaborative study to analyze a very large set of data coming from the Aberrant Behavior Checklist (ABC) in children and adults with Fragile X syndrome. The team will collect archived data on this measure across 9-10 Fragile X centers (UC Davis, Stanford, Duke, U. Indiana, U. North Carolina, Johns Hopkins, U. Denver, Rush University, and U. Wisconsin). This will represent close to 1000 individuals with Fragile X.

This study was recommended by many scientists who participated in a Fragile X Outcome Measures meeting held last year by NICHD. The ABC is being used as an outcome measure in many ongoing and planned trials, but we really do not know how reliable, valid, and sensitive it is in Fragile X. The team will investigate whether the ABC should be used as is or needs improvement and also to direct future efforts to develop a FXS-specific scale.