Telephone Call

Social worker will gather individual’s concerns and information, and explain the genetic testing process, risks, costs and considerations.  The individual will be encouraged to identify one support person to accompany them to both clinic visits. Current support system will be explored, and the recommendation of additional support, i.e. psychologist, social worker, support groups, etc.  will be discussed if needed.  Will schedule genetic testing or consultation appointment at this time. 

Packet Mailed

Individual will receive information in the mail to include a letter confirming appointment date/time, and outlining the costs of the facility and lab.  Map/directions, patient health questionnaire, and genetic testing information will also be included in the packet.  

Visit 1

Individual and their support person meets with the neurologist/genetic counselor, who specializes in HD, and the social worker.  Social worker will conduct a mental health screening, and follow up on discussion about risks, benefits and considerations of genetic testing from previous phone call.  Neurologist will meet with individual to continue exploring all of these things, and may conduct a neurological exam, but an individual has the right to decline the exam if he or she so desires. The neurologist/genetic counselor will also review genetic principles that relate to HD and the gene test, and review the family history, confirmation of the family diagnosis if known, and explanation of the individual’s risk status.  Informed consent will be obtained, and saliva will be collected and sent to the lab.

Visit 2

Individual and their support person meets with the neurologist/genetic counselor and social worker to receive their results.  The neurologist/genetic counselor will explain relevant information from the genetic report and provide a copy to the individual to keep.  Post-test supportive counseling is provided, and next steps are discussed as appropriate.   

Follow-Up

Social worker will follow-up with a phone call within a few weeks of testing to assess the individual’s adjustment to his/her test results.  Information about research/clinical trials, counseling, support group, etc. will be offered as needed.