The major goal of Project Chroma is to reach the estimated 1 in every 30,000 individuals affected with ACHM in the United States and offer them state of the art genetic testing to try to identify the specific genetic cause of their disease.
If we are to succeed in this ambitious undertaking, we believe strongly that it will be important for the doctors who currently care for these patients to be involved at every level of the effort. The Project Chroma team is ready to support the patients' doctors in any way necessary to achieve the goals of the project, but, we believe that the patients' doctors must remain at the center of each patient's medical care. Thus, all individuals interested in participating in the project will be encouraged to do so through their existing physicians.
When ordering this nonprofit clinical test, a patient may express interest in learning about ACHM research projects by checking a box on the order form. If this box is checked, members of the Project Chroma team will contact the patient after the genetic test is complete and the report is sent to offer the patient the opportunity to participate in an appropriate research project. For example, patients with negative results will have the opportunity to participate in projects designed to find the remaining ACHM genes while patients with positive results will have the opportunity to participate in projects designed to correlate clinical findings with specific genetic changes.
One of the fundamental goals of Project Chroma is to make clinical genetic testing of ACHM a standard of care. We are moving in that direction but since we are not able to bill insurance companies directly, it is important for patients and physicians to work together to provide payment for genetic testing.
Whenever possible, parental DNA Samples from the patient’s parents should also be sent at the same time the patient’s sample is sent. The parental DNA will be screened for all plausible disease-causing genetic variations that are identified in the patient to make sure that variations that we suspect to be responsible for the patient’s disease are inherited in the correct pattern. Screening of the parents is considered a standard part of the patient’s test and is performed at no additional charge.