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| ID | Type | Description | Link |
|---|---|---|---|
| 1R01HL125918-01 | U.S. NIH Grant/Contract | View source |
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| Name | Class |
|---|---|
| National Institutes of Health (NIH) | NIH |
| National Heart, Lung, and Blood Institute (NHLBI) | NIH |
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The goal is to determine how lifestyle and exercise impact the well-being of individuals with hypertrophic cardiomyopathy (HCM) and long QT syndrome (LQTS).
Ancillary study Aim: To understand how the coronavirus epidemic is impacting psychological health and quality of life in the LIVE population
Yale is the central site for this multicenter study. Patients with HCM and LQTS will be recruited via high-volume HCM and LQTS sites, patient-groups, and websites. Information about exercise participation will be acquired via interview and online instruments at enrollment and every six months for three years. Quality of Life questionnaires will be filled out at enrollment and at the end of the study. Participants will receive a Fitbit (pedometer) and will wear it initially for two weeks and then one week every three months. The Fitbit is used for assessment of exercise level only. Clinical records will be obtained from treating physicians. Participants will also be asked to call the central site if they experience syncope, appropriate ICD (implantable cardioverter defibrillator) shock, or resuscitated arrest. Information regarding the patient's activity at the time of event will then be obtained by phone interview. Follow-up clinical records will be obtained as indicated to corroborate endpoints.
The Ancillary study is optional. This will include all of the baseline questionnaires,as well as selected questions from the Epi-Pandemic Impacts Inventory.
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| Label | Type | Description | Intervention Names |
|---|---|---|---|
| LQT/HCM sedentary patients | LQT/HCM sedentary lifestyle | ||
| LQT/HCM moderate/vigorous exercise | LQT/HCM participate in moderate or vigorous exercise |
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| Measure | Description | Time Frame |
|---|---|---|
| To compare composite risk of death, cardiac arrest, ventricular arrhythmias, or syncope in individuals with HCM or LQTS who are participating in moderate or vigorous exercise and in sedentary individuals. | Collect information for death, resuscitated arrest, syncope, appropriate ICD shock , during exercise or at other times, through records from the provider and patient interviews | Five years |
| Measure | Description | Time Frame |
|---|---|---|
| Emotional Quality of Life assessed using Pediatric Cardiac Quality of Life Inventory (Pcqli) | Will assess using Pediatric Cardiac Quality of Life Inventory (Pcqli) | Five years |
| Physical Quality of Life assessed using Pediatric Quality of Life Inventory (PedsQL) |
| Measure | Description | Time Frame |
|---|---|---|
| Epi-Pandemic Impacts Inventory (select questions) | Will assess COVID 19 infection in themselves/family/friends, and impact on jobs and financial status. | 4 months |
Inclusion Criteria:
Exclusion Criteria:
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Individuals with Hypertrophic Cardiomyopathy or Long QT Syndrome between the ages of 8-60.
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| Name | Affiliation | Role |
|---|---|---|
| Rachel Lampert, MD | Yale University | Principal Investigator |
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| University of Arizona | Tucson | Arizona | 85724 | United States | ||
| University of California Irvine |
| PubMed Identifier | Type | Citation | Retractions |
|---|---|---|---|
| 39051104 | Derived | Lampert R, Day S, Ainsworth B, Burg M, Marino BS, Salberg L, Tome Esteban MT, Abrams DJ, Aziz PF, Barth C, Behr ER, Bell C, Berul CI, Bos JM, Bradley D, Cannom DS, Cannon BC, Concannon MA, Cerrone M, Czosek RJ, Dubin AM, Dziura J, Erickson CC, Estes NAM 3rd, Etheridge SP, Goldenberg I, Gray B, Haglund-Turnquist C, Harmon K, James CA, Johnsrude C, Kannankeril P, Lara A, Law IH, Li F, Link MS, Molossi SM, Olshansky B, Noseworthy PA, Saarel EV, Sanatani S, Shah M, Simone L, Skinner J, Tomaselli GF, Ware JS, Webster G, Zareba W, Zipes DP, Ackerman MJ. Vigorous Exercise in Patients With Congenital Long QT Syndrome: Results of the Prospective, Observational, Multinational LIVE-LQTS Study. Circulation. 2024 Aug 13;150(7):516-530. doi: 10.1161/CIRCULATIONAHA.123.067590. Epub 2024 Jul 25. | |
| 28912187 |
| Label | URL |
|---|---|
| The goal of the Lifestyle and Exercise in Hypertrophic Cardiomyopathy Study (LIVE-HCM) is to determine how lifestyle and exercise impact the well-being of individuals with HCM | View source |
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Will assess using Pediatric Quality of Life Inventory (PedsQL) |
| Five Years |
| Physical Quality of Life assessed using Health Status Questionnaire (SF36) Quality of Life for Adults | Will assess using Health Status Questionnaire (SF36) Quality of Life for Adults | Five Years |
| Orange |
| California |
| 92868 |
| United States |
| University of California, San Diego (Rady's Children's Hospital) | San Diego | California | 92123 | United States |
| Stanford | Stanford | California | 94305 | United States |
| Yale University | New Haven | Connecticut | 06420 | United States |
| Children's National | Washington D.C. | District of Columbia | 20010 | United States |
| Miami Children's (Nicklaus Children's Hospital) | Miami | Florida | 33155 | United States |
| Lurie Children's | Chicago | Illinois | 60611 | United States |
| Indiana University | Indianapolis | Indiana | 46202 | United States |
| University of Iowa | Iowa City | Iowa | 52242 | United States |
| University of Louisville | Louisville | Kentucky | 40202 | United States |
| Johns Hopkins | Baltimore | Maryland | 21287 | United States |
| Tufts | Boston | Massachusetts | 02111 | United States |
| Boston Children's | Boston | Massachusetts | 02115 | United States |
| Brigham & Women's | Boston | Massachusetts | 02115 | United States |
| University of Michigan | Ann Arbor | Michigan | 48109 | United States |
| Mayo Clinic | Rochester | Minnesota | 55905 | United States |
| Children's Omaha | Omaha | Nebraska | 68114 | United States |
| NYU | New York | New York | 10016 | United States |
| Cincinnati Children's | Cincinnati | Ohio | 45229 | United States |
| Cleveland Clinic | Cleveland | Ohio | 44195 | United States |
| Oregon Health & Science | Portland | Oregon | 97239 | United States |
| Children's Hospital of Philadelphia (CHOP) | Philadelphia | Pennsylvania | 19104 | United States |
| University of Pittsburgh | Pittsburgh | Pennsylvania | 15213 | United States |
| Vanderbilt University | Nashville | Tennessee | 37232 | United States |
| UT Southwestern | Dallas | Texas | 75390 | United States |
| Texas Children's | Houston | Texas | 77030 | United States |
| University of Utah (Primary Children's) | Salt Lake City | Utah | 84113 | United States |
| Seattle Children's | Seattle | Washington | 98105 | United States |
| Royal Prince Alfred Hospital/Sydney AU | Camperdown | New South Wales | NSW 2050 | Australia |
| University of BC, Providence Health | Vancouver | British Columbia | V6E 1M7 | Canada |
| University of BC, Children's | Vancouver | British Columbia | V6H 3V4 | Canada |
| University of Toronto | Toronto | Ontario | Canada |
| Starship Children's Hospital | Grafton | Auckland | New Zealand |
| St. Georges, London | London | England | SW17 ORE | United Kingdom |
| Royal Brompton Hospital | London | England | SW3 6NP | United Kingdom |
| Derived |
| Lee TM, Hsu DT, Kantor P, Towbin JA, Ware SM, Colan SD, Chung WK, Jefferies JL, Rossano JW, Castleberry CD, Addonizio LJ, Lal AK, Lamour JM, Miller EM, Thrush PT, Czachor JD, Razoky H, Hill A, Lipshultz SE. Pediatric Cardiomyopathies. Circ Res. 2017 Sep 15;121(7):855-873. doi: 10.1161/CIRCRESAHA.116.309386. |
| ID | Term |
|---|---|
| D002312 | Cardiomyopathy, Hypertrophic |
| D008133 | Long QT Syndrome |
| ID | Term |
|---|---|
| D009202 | Cardiomyopathies |
| D006331 | Heart Diseases |
| D002318 | Cardiovascular Diseases |
| D001020 | Aortic Stenosis, Subvalvular |
| D001024 | Aortic Valve Stenosis |
| D000082862 | Aortic Valve Disease |
| D006349 | Heart Valve Diseases |
| D001145 | Arrhythmias, Cardiac |
| D000075224 | Cardiac Conduction System Disease |
| D006330 | Heart Defects, Congenital |
| D018376 | Cardiovascular Abnormalities |
| D000013 | Congenital Abnormalities |
| D009358 | Congenital, Hereditary, and Neonatal Diseases and Abnormalities |
| D010335 | Pathologic Processes |
| D013568 | Pathological Conditions, Signs and Symptoms |
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