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Long QT Syndrome-Population Genetics and Cardiac Studies (LQTS)

This study has been completed.
National Heart, Lung, and Blood Institute (NHLBI)
Information provided by (Responsible Party):
Arthur J. Moss, University of Rochester Identifier:
First received: May 25, 2000
Last updated: October 20, 2015
Last verified: October 2015
To investigate the clinical, genetic and cardiologic aspects of the Long QT Syndrome, a predominantly hereditary disease with episodic malignant arrhythmias and sudden death, and a demonstrated gene linkage in a large pedigree.

Cardiovascular Diseases Heart Diseases Ventricular Arrhythmia Long QT Syndrome

Study Type: Observational
Study Design: Observational Model: Family-Based
Time Perspective: Prospective
Official Title: Long QT Syndrome-Population Genetics and Cardiac Studies

Resource links provided by NLM:

Further study details as provided by Arthur J. Moss, University of Rochester:

Primary Outcome Measures:
  • None. This is an observational study. [ Time Frame: By study end ]

Biospecimen Retention:   Samples With DNA

Enrollment: 2125
Study Start Date: August 1985
Study Completion Date: April 2013
Primary Completion Date: April 2013 (Final data collection date for primary outcome measure)
  Show Detailed Description


Ages Eligible for Study:   up to 100 Years   (Child, Adult, Senior)
Sexes Eligible for Study:   All
Accepts Healthy Volunteers:   No
Sampling Method:   Non-Probability Sample
Study Population
As of the 2013 closeout report, 1329 probands with clinical dx of LQTS and members of their extended families have been enrolled in the LQTS Registry. By ECG classification, this includes 3420 probands and affected family members, 3533 unaffected family members, and 2105 family members with borderline QTc. Of those, 2125 have had mutations identified.
Probands are required to have clinical dx of LQTS. Family members are also invited to participate regardless of their dx.
  Contacts and Locations
Choosing to participate in a study is an important personal decision. Talk with your doctor and family members or friends about deciding to join a study. To learn more about this study, you or your doctor may contact the study research staff using the Contacts provided below. For general information, see Learn About Clinical Studies.

Please refer to this study by its identifier: NCT00005176

United States, New York
University of Rochester
Rochester, New York, United States, 14642
Sponsors and Collaborators
University of Rochester
National Heart, Lung, and Blood Institute (NHLBI)
Principal Investigator: Arthur Moss University of Rochester
  More Information

Weitkamp LR, Moss AJ: The Long QT (Romano-Ward) Syndrome Locus, LQT, is Probably Linked to the HLA Loci. Cytogenet Cell Genet, 40:775, 1985
Locati E, Schwartz PJ, Moss AJ, Crampton RS: Long-Term Survival After Left Cervico-Thoracic Sympathectomy in High Risk Long QT Syndrome Patients With Refractory Ventricular Arrhythmias. J Am Coll Cardiol, 7:234A, 1986
Moss AJ. Prolonged QT-Interval Syndromes. JAMA, 256:2985-2987, 1986. (Published erratum appears in JAMA, 257(4):487, 1987

Responsible Party: Arthur J. Moss, Professor, University of Rochester Identifier: NCT00005176     History of Changes
Other Study ID Numbers: 1053
R01HL033843-16 ( U.S. NIH Grant/Contract )
Study First Received: May 25, 2000
Last Updated: October 20, 2015

Additional relevant MeSH terms:
Cardiovascular Diseases
Heart Diseases
Long QT Syndrome
Pathologic Processes
Arrhythmias, Cardiac
Heart Defects, Congenital
Cardiovascular Abnormalities
Congenital Abnormalities processed this record on September 20, 2017