| Item | Content |
|---|---|
| Research project name | Research Project on the Rare / Intractable Disease |
| Study title | Establishment of diagnostic criteria and classification of degree of severity of acquired von Willebrand syndrome associated with incurable cardiovascular diseases |
| Name of principal investigator | Hisanori Horiuchi |
| Name of institution of the principal investigator | Institute of Development, Aging and Cancer, Tohoku University |
| Target disease | Acquired von Willerbrand syndrome associated with cardiovascular diseases |
| Registry name | The AVeC Study registry |
| Purpose of registry | Survey of natural history, Investigation into the number or the distribution of patients, Sample collection, Investigation of biomarkers, Provision of information to physicians in charge |
| Overview of registry | The AVeC (The acquired von Willebrand syndrome co existing with cardiovascular diseases Study) is a study that registers patients with target cardiovascular diseases, observes the patients prospectively for two years, and clarifies frequency of aVWS, conditions/frequency resulting in major hemorrhage, and indices for prediction of hemorrhage for each cardiovascular disease based on cross-sectional and longitudinal analyses for establishment of the diagnostic criteria and classification of the degree of severity of aVWS associated with cardiovascular diseases including hypertrophic cardiomyopathy, pulmonary hypertension and aortic stenosis. By May 17, 2017, 1517 samples in 452 patients mostly with cardiovascular diseases have been registered. Case registration will be continued during 2017 to follow hemorrhagic complications. |
| Research item | Name, Sex, Date of birth, Past medical history, Complication, History of present illness, History of treatment, Laboratory data, Degree of severity, Clinical course, Prognosis, Others (hemorrhagic events) |
| Contact | Hisanori Horiuchi |
| E-mail address | hisanori.horiuchi.e8●tohoku.ac.jp |
| Registry URL | http://www2.idac.tohoku.ac.jp/avec/ |
* If the E-mail address is shown, replace "●" with "@", please.