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Genetic Testing

Predictive Genetic Testing Program for Huntington's Disease

TheHDSA Center of Excellence at Hennepin County Medical Center is offering a program for predictive testing of the gene for people at risk for Huntington Disease (HD).  HD is a progressive neurologic condition that is inherited.  It is a fatal disease with symptoms usually appearing in the third or fourth decade of life.  Some individuals at risk wish to know if they have the gene before symptoms appear.  This program is designed to offer predictive testing to appropriate individuals along with emotional and medical follow up care.

Individuals interested in predictive testing go through a specific program designed to meet their unique needs.  At risk individuals should have a documented positive family history of HD and will be asked to provide medical records confirming the diagnosis in the family.

The testing program is outlined below. Three or more visits at Hennepin County Medical Center or at a designated center for out of state individuals are usually necessary. 

Appointment #1 Genetics consultation:  This includes documenting the family history, reviewing medical records, genetic counseling, completion of intake forms, consent forms signed.         
Appointment #2

Psychological consultation

Appointment #3

Neurologic evaluation

Appointment #4 Blood collection (if not already done)
Appointment #5

Discussion of results

Appointment #6 Follow-up counseling. Medical follow-up is coordinated through the HDSA Center of Excellence at Hennepin County Medical Center

For individuals coming from a long distance, Visits #1 through 3 may be combined into the same week.  Follow-up supportive counseling can be arranged near the individual's home. No laboratory results will be given to patients over the phone. Individuals coming to Hennepin County Medical Center for testing may be asked identify a contact person for follow-up supportive care (i.e. psychiatrist, counselor, doctor, clergy).  Testing may be refused to individuals under 18 years of age or those who are found not appropriate following visits #1, 2 and 3.  Some individuals may not be appropriate for testing if the family history of HD cannot be confirmed.

The estimated cost for each clinic visit is $200.00.  The laboratory cost for the molecular genetic test is approximately $250.00.  Please see the estimated fee schedule for more specific information.  In some cases, medical insurance will not pay for this testing.  Some people choose to pay for testing out of their own pocket because of concerns about insurance discrimination.  Individuals may withdraw from the testing procedure at any time.  Blood samples for genetic testing can be held indefinitely.

If you are interested in setting up an appointment for predictive genetic testing at  Hennepin County Medical Center or at a center in your state, please contact us at the either (612)-873-2595, #4 or at (612)-873-4686.  Feel free to call with questions or concerns.

Program Faculty:

Martha Nance, M.D., Neurologist

Carol Ludowese, M.S., Genetic Counselor

Jeffrey Boyd, Ph.D., Clinical Psychologist
 

 

Special Note: We would like to acknowledge and thank the HCMC Service League for providing grant funds to help maintain these web pages.