Colorectal Cancer
Outcomes in Education and Counseling for HNPCC Testing
NCI-95-HG-0165
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Investigator(s): |
Don Hadley, M.S., C.G.C.
Phone: 301-496-3980
1-866-585-7192 ext. 2 (Toll Free)
dhadley@mail.nih.gov
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Primary Eligibility:
- Hereditary Non-polyposis Colorectal Cancer or Lynch syndrome
- Recruitment of new families with HNPCC into this protocol stopped as of 04-26-06; long-term follow-up continues with previously recruited families
- Two new studies are under way with the previously recruited HNPCC families; these studies do not offer genetic counseling or testing; the current studies focus on:
- Understanding family communication about cancer, in general, as well as specific to HNPCC
- Learning from family members who did not choose to receive genetic counseling and testing through the original study
Treatment Plan:
- Long-term Follow-up Study: Previous participants complete a paper & pencil questionnaire (30-45 minutes); eligible participants will have completed their last study interview 2 or more years ago
- Family Communication Study involves participation in a telephone interview; past participants as well as family members not previously involved are eligible (20-30 minutes)
- All in the Family Study (for family members not seeking genetic counseling or testing through the original study): participants complete a paper & pencil questionnaire (30-45 minutes)
Additional Information:
- This trial will be conducted at the NIH Clinical Center in Bethesda, MD. It is open to patients who meet the eligibility requirements, regardless of where they live in the United States.
- There is no charge for medical care received at NIH Clinical Center.
- PDQ (Physicians Data Query) - provides additional details about this study for health care providers.
Reviewed: 6/5/08
Updated: 2/28/07
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