The Cedars-Sinai Smidt Heart Institute Takotsubo Registry & Proteomic Study
The Smidt Heart Institute Takotsubo Registry will study participants’ medical histories, from the time they experienced a Takotsubo attack through annual medical updates. This is an “observational study,” which means that researchers will review medical records (including echocardiograms and angiograms). The data will be entered into a large database, together with demographic information and responses to electronic study questionnaires. Registry participants will also be asked to provide an optional blood sample, which will be collected through an easy home-sampling kit. The kit will be sent to any participant's residence who agrees to participate in the repository. The blood samples will undergo proteomic research (analysis and profiling of proteins), which provides researchers with important molecular clues about the mechanisms with which Takotsubo syndrome progresses. These clues can help doctors identify individuals who are at risk for additional Takotsubo-related medical complications. Proteomics studies provide an opportunity for new approaches to Takotsubo diagnosis and treatment.
The U.S. National Institute of Science estimated that at least 0.02 percent of all acute hospitalizations in the U.S. during 2008 were actually due to Takotsubo. This corresponds to between 6,000 and 7,000 cases in 2008 alone. The Smidt Heart Institute Takotsubo Registry hopes to enroll as many of the individuals who experience a Takotsubo event each year, both within the U.S. and ultimately, internationally.
Key Inclusion Criteria:
- Diagnosis of Takotsubo syndrome
- Agree to submit medical records
Key Exclusion Criteria:
- Less than 18 years old
How Do I Join the Registry?
For the Takotsubo Registry to reach our goals of:
- Accurately understanding the prevalence, recurrence and future impact of Takotsubo,
- Determining which individuals are at risk of having another Takotsubo or related condition, and
- Determining potential treatment targets to develop therapeutic strategies
You are asked to submit the following medical records and help build the largest database on Takotsubo based in the U.S.:
- Medical records from the time of your Takotsubo event
- Two echocardiograms (event and recovery) or ventriculograms and accompanying reports
- Coronary angiogram or computed coronary tomography angiogram performed at the time of your Takotsubo event
CDs containing medical records can alternatively mailed to:
8631 W. 3rd St. Suite 740
Los Angeles, CA 90048
Registry Enrollment Process
Those who meet the Registry’s approved criteria will receive an email inviting them to enroll.
- The email contains an electronic link to the Registry’s Consent and HIPAA form that describes the research and asks interested individuals to provide electronic signatures, followed by a series of electronic questionnaires that enable participants to describe their own Takotsubo experiences.
- Registrants who additionally agree to provide a blood sample will be mailed a self-administered blood sample collection kit.
Registry participants will receive an email each year that invites them to share health updates.