People affected by rare inherited diseases need the reliable information that comes through quality genetic testing. The Collaboration, Education and Test Translation (CETT) Program helps bring new tests to patients while encouraging clinical laboratory and research collaborations, and supporting the electronic collection of genetic and clinical data in public databases to leverage the information into new research and new treatment possibilities. Successful collaborations have resulted in five tests being made available through the CETT Program: Cornelia de Lange at the University of Chicago; Joubert at Prevention Genetics; Cherubism at Sick Kids Toronto; X-linked Chondrodysplasia Punctata at the University of Chicago; and Kallmann Syndrome at GeneDX.

Collaboration is the key word in the CETT Program’s goal to help facilitate the translation of new tests for rare genetic diseases. The program’s goals are to translate as many tests as possible and ensure that the best possible test is offered, whether the specific genetic condition affects 5 people or 50,000.

Getting Started

First, review the CETT Program Application and Instructions. Second, contact the CETT Program Coordinator, Andy Faucett, at info@CETTProgram.org or 404-727-4510. The FAQ's provide helpful information.

Application Process

Program applications are designed to provide the CETT Program Staff and Review Board with adequate information to evaluate the scientific evidence supporting the test, testing methodology and laboratory qualifications, and the roles and relationships of the members of the CETT Collaborative Group. But the applications do much more.

Resources and Education

The CETT Program provides examples of educational material to help applicants (CETT Collaborative Groups) develop effective educational materials and laboratory reports. This link also provides information about using and understanding genetic testing.