People affected by rare inherited diseases need the reliable information that comes through quality genetic testing. Collaboration is the key word in the CETT Programs goal to help facilitate the translation of new tests for rare genetic diseases. The programs goals are to translate as many appropriate tests as possible, ensure that the best possible test in light of todays knowledge is offered and ensure that the test meets the needs of the community. All tests are important whether the specific condition affects 5 people or 50,000. The CETT Program encourages clinical laboratory and research collaborations, and supports the electronic collection of genetic and clinical data in public databases to leverage the information into new research and new treatment possibilities. The CETT Program objectives require a strong collaboration between researchers, clinicians, patient advocates and clinical laboratories. The CETT Program has several new enhancements to facilitate the development of collaborations.

The collection of important clinical and genetic information is part of the routine testing process. The CETT Program has created documents and answers to frequently asked questions (FAQs) that detail the specific policies and safeguards used by CETT Program participants to maximize the benefit of these data while protecting patient privacy.

One of the key goals of the CETT Program is increasing research opportunities for rare diseases. Research can produce breakthroughs in treatment and management of these conditions. It also may lead to improved treatment and care of other common health conditions. Research opportunities are created by protecting patient confidentiality and making the information freely available to the research community. Keeping de-identified clinical data in public databases for research purposes is a groundbreaking approach. To see the privacy protection policies created by the CETT Program click

Researchers play a key role in the CETT Programs goal to facilitate the translation of new tests for rare genetic diseases by providing assistance in the test design and translation process. After test development, researchers provide consultation to the clinical laboratory as new gene variants are identified and classified. Researchers also work with the clinical laboratory, clinicians and patient advocacy members to develop and update educational materials.

Getting Started

First, contact the CETT Program Coordinator, Andy Faucett, at info@CETTProgram.org or 404-778-8420 to discuss your idea and register in CETTrack. Second, review the CETT Program Application and Instructions. The FAQ's provide helpful information.

Application Process

The application process starts with registering your Collaborative Group in CETTrack. The application is 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 strength and commitment of the Collaborative Group. But the application does 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.