THE C.A.R.E. FOUNDATION disseminates current information about research and advances in saving the lives of patients with acquired heart disease and inherited rhythm disorders.

New ICD Sports Registry!        The ICD Sports Registry is now calling for participants to determine the safety of sports for patients with ICDs. -February 8, 2007 Information Letter (.pdf) ICD Sports Registry Brochure (.pdf)

Update  on International Long QT Registry    The International Long QT Registry has enrolled more than 1200 families since it was established in 1979 by Arthur J. Moss, MD and Peter J. Schwartz, MD. As of July 1, 2003, the Registry stopped enrolling new families and is focusing efforts on gathering follow-up information from those families already enrolled.  To read “25th Anniversary of the International Long-QT Syndrome Registry”, by Dr. Moss and Dr. Schwartz in the American Heart Association Journal, Circulation, go to: http://circ.ahajournals.org/cgi/content/full/111/9/1199 For individuals with Long QT and an ICD, there is an ICD-LQTS Registry to study in greater detail the effectiveness of implantable defibrillators in Long QT. Enrollment in the ICD registry involves completing a questionnaire, medical release, and consent form. Follow-up will be conducted every six months with a short questionnaire. The Registry will contact your cardiologist every four months for ICD information, operative reports and visit summaries. Heart Research and ICD LQTS also offers genetic testing for the individuals and families enrolled in the study.   Enrollment in the ICD-LQTS Registry is open to ALL patients with Long QT and an ICD.  Interested patients may contact:  Betty Mykins, at (585)-273-3692 or Betty.Mykins@heart.rochester.edu for more information.

University of Miami School of Medicine Genetic Testing - Call for Participants For more information, please see our Call for Participants PDF.

National Heart Lung and Blood Institute and Office of Rare Diseases - Recognition and Treatments of Rare Inherited Arrhythmia

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