Table 1.
Similarities and differences between the Portuguese and Brazilian programs for genetic counseling and presymptomatic testing.
| Porto (Portugal) | Porto Alegre (Brazil) | ||
|---|---|---|---|
| Team | Clinical geneticist, genetic counselor, psychologist, neurologist, psychiatrist and social worker | Clinical geneticists, genetic counselor, clinical psychologist, neurologist, and psychiatrist | |
| Enrollment criteria | To be at 50% risk, 18 years or older, asymptomatic* (both Programs) | ||
| Pretest | 1st visit | - genetic counseling - psychology evaluation - first blood sample taken | - genetic counseling: core staff |
| 2nd visit | 3 weeks after 1st visit: - genetic counseling - social worker’s evaluation - consent form signed -second blood sample taken | 1 to 2 weeks after 1st visit: - psychological assessment with psychologist or psychiatrist | |
| 3rd visit | 3 weeks after 2nd visit: - communication of results | 1 to 2 weeks after 2nd visit: - new session with psychologist/psychiatrist | |
| 4th visit | No | 1 to 2 weeks after 3rd visit: - 2nd genetic counseling - blood collection | |
| 5th visit | No | - when results are ready: - communication of results | |
| Neurological evaluation | Always available, but only upon referral of the team (both Programs) | ||
| Psychiatrist? Social worker? | Upon referral of the team Yes | Yes No | |
| Number of blood collections | 2 | 1 | |
| Signed consent form | Yes | No | |
| Disclosure of results | 3rd visit | 5th visit | |
| Post-test follow-ups | 3 weeks and 6 and 12 months after disclosure: psychologist or psychiatrist. 12 months after disclosure: neurologist | 3 weeks and 6 and 12 months after disclosure: psychologist or psychiatrist | |
| Follow-ups upon request | Clinical geneticist, counselor, and/or social worker | Clinical geneticist, counselor, social worker, and/or neurologist | |
*
For more details and exceptions, see text.