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
ClinicalTrials.gov 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 University of Rochester:

Primary Outcome Measures:
  • None. This is an observational study. [ Time Frame: By study end ] [ Designated as safety issue: No ]

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)
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Ages Eligible for Study:   up to 100 Years
Genders Eligible for Study:   Both
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 ClinicalTrials.gov 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
Vincent GM: The Heart Rate of Romano-Ward Long QT Syndrome Patients. Circulation, 72(III):44, 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
ClinicalTrials.gov Identifier: NCT00005176     History of Changes
Other Study ID Numbers: 1053  R01HL033843-16 
Study First Received: May 25, 2000
Last Updated: October 20, 2015
Health Authority: United States: Federal Government

Additional relevant MeSH terms:
Cardiovascular Diseases
Long QT Syndrome
Arrhythmias, Cardiac
Cardiovascular Abnormalities
Congenital Abnormalities
Heart Defects, Congenital
Heart Diseases
Pathologic Processes

ClinicalTrials.gov processed this record on May 25, 2016