Huntington Disease: Client / Family Education Checklist

University of Iowa
Division of Medical Genetics
Testing Protocols

Patient’s Name ________________________

Hospital Number _______________________

DOB _________________________________

Initials _______________________________

I. GENERAL INFORMATION

A. Clinical manifestations
B. Genetic aspects/Gene abnormality
C. Treatment
D. Options for Family Planning
E. Social & Psychological Implications
F. Verification of Diagnosis in Family
G. Risk assessment

II. TESTING INFORMATION

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A. Testing Protocol/Cost/Time Table
B. DNA abnormality
C. Test Outcomes
D. Sample collection
E. Test limitations/accuracy
F. Test Restrictions (age, prenatal)
G. Sample storage/ownership
H. Confidentiality
I. Withdrawal from testing
J. Alternatives

III. CONSEQUENCES

A. Psychological
B. Career/Employment
C. Financial Planning
D. Medical, Disability & Life Insurance
E. Effect on spouse/partner/family planning/children
F. Effect on parents and other family members

IV. PSYCHOLOGICAL SUPPORT

A. Support person
B. Professional Counseling-UIHC or local
C. Support Groups-HDSA local chapter
D. Follow-up

Initials/Signatures __________________________________________________________

PROTOCOL SENT / GIVEN ______________________________ Date

GENETIC COUNSELING ________________________ Date

NEUROLOGICAL EVALUATION_______________________________________________________ location/date/results

DNA TEST RESULTS___________________________________________________________ location/date/results

FOLLOW-UP PLAN______________________________________________________________

REFERRALS_______________________________________________________________  

Copyright 1997, University of Iowa, Division of Medical Genetics