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Survey Research Center
Deep Vein Thrombosis Registration Form
Venous thromboembolism (VTE; blood clot in a vein) consists of a deep vein thrombosis (DVT; blood clot in the inner or "deep" vein of the pelvis, thigh, or calf) and pulmonary embolism (PE; blood clot that has broken off from a DVT and flowed to the lungs). VTE is common, affecting almost one million US residents each year; of these, up to one third may die.
We have discovered that the risk for VTE is partly inherited, and we have discovered some of the genes that increase VTE risk. However, we suspect that many other and, as yet, unidentified genes also increase VTE risk. One of the ways to discover VTE- risk genes is by studying families in which the risk of VTE appears to be very high.
We are particularly interested in identifying:
Families in which three or more blood- related family members have had VTE and are alive and potentially available to provide a blood or saliva sample in the future;
Families in which at least one brother or sister has had VTE and at least one other brother or sister (who has not had VTE) is alive and potentially available to provide a blood or saliva sample in the future; and
Families in which at least one daughter or son have been affected by VTE and both parents are alive and potentially available to provide a blood or saliva sample in the future. The blood and/or saliva samples would be used to extract DNA for future research studies addressing thrombosis.
We would be very grateful if you would complete the electronic questionnaire. The questionnaire collects information that will be used to construct your family tree (pedigree) and collects important information regarding your family race and ethnic ancestry. If it is felt that your family may provide additional valuable information, you may be contacted in the future and asked to participate in further study. Participating in this study does not obligate you to participate in future research.
In order for us to be allowed to use this information and construct your family tree, we will need you to sign a form indicating your consent for us to use your information for research purposes. You will find the instructions on signing this consent form in the first few pages of this on-line questionnaire.
This study consists of completion of this on-line questionnaire. Depending on the size of your family and the complexity of your medical history, it may take 30 to 60 minutes to complete the questionnaire. In some places, the questionnaire will ask you to provide dates of a VTE event or dates of exposures to VTE risk factors. If you cannot recall the exact date, please provide the month and year (or at least the year) as best you can remember. Your participation in this study is completely voluntary. Your medical care will not be affected if you decide not to participate.
We appreciate your interest in the Deep Vein Thrombosis Family Study and the role it will play in further study of this disease. Please fill in the following information and submit it.
The survey does not have the ability to save a completed portion, exit, and return to finish at a later time. It will not "time- out" during short breaks, but it is recommended that you complete the survey at one sitting.