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Genetic Testing at IU

Genetic Testing for Huntington Disease at Indiana University

The Predictive Testing Program at Indiana University follows guidelines for testing developed by the Huntington Disease Society of America and the World Federation of Neurology Research Group on Huntingtons Chorea. These guidelines include a neurological examination, pretest counseling, disclosure of test results in person and followup.

1. Neurological Examination
If you are interested in testing for Huntington Disease you will be scheduled for a neurological examination in the Indiana University Huntington Disease Clinic. The purpose of this visit is to see whether you are currently showing any symptoms of Huntington Disease. A diagnosis of HD is made based on the finding of clinical symptoms of HD. If you are found to be already showing symptoms of HD, you will have the option whether or not to proceed with genetic testing to confirm this diagnosis, although in many cases further testing is not necessary. HD clinic is held on Fridays 2-4 times per month. Clinics may often be booked several months ahead. To schedule an appointment for a neurological examination, contact the Center of Excellence at (866)488-0008.

2. Pre-test Counseling
If your neurological examination is normal, and you wish to proceed with predictive testing, you will be scheduled for at least one session of pretest counseling. The purpose of this visit is to insure that you understand the possible outcomes of testing , have thought through the potential consequences of testing for yourself and your family, and have made all necessary arrangements prior to testing. We recommend that you bring your spouse, a friend, or other support person with you to this session.

3. Disclosure of Test Results
Test results are conveyed in person. We recommend that a support person be present at this meeting when test results are disclosed. Test results will be reviewed as well as plans for followup and any other services that might be necessary.

4. Followup
Arrangements for followup will be made on an individual basis depending on test results and the desires of the person who has been tested.

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