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Join the European Li-Fraumeni Families Foundation
Together we can do much more for the Li-Fraumeni families
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09 november 2010
The purpose of the Li-Fraumeni Syndrome (LFS) registry study is to collect information on personal cancer history, family history, and blood and tissue specimens from patients and family members with Li-Fraumeni syndrome. The registry will be a repository of data and specimens available for researchers who are working to understand the genetic basis, prevention and treatment of Li-Fraumeni syndrome.
Who is eligible?
All individuals who have the rare inherited Li-Fraumeni Syndrome, or are part of a family with LFS, are eligible to participate in the study.
What is involved
The Li-Fraumeni syndrome registry is a questionnaire study. You will be asked to complete a questionnaire and a Family History Form. You will be asked to donate three tubes of blood (approximately six tablespoons) for use in research.
How can I get more information about the Li-Fraumeni syndrome registry study?
Serena Masciari, MD, MSc
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(800) 828-6622, option 5
or (617) 632-6821
