Clinical Characteristics and Associations of the "Good Fontan" Patient

NCT ID: NCT03470428

Last Updated: 2023-04-19

Study Results

Results pending

The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.

Basic Information

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Recruitment Status

COMPLETED

Total Enrollment

146 participants

Study Classification

OBSERVATIONAL

Study Start Date

2018-03-05

Study Completion Date

2023-04-18

Brief Summary

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This study aims to determine what are some of the clinical characteristics and associations of Fontan patients who are doing well, as well as how accurate cardiology providers are at predicting the likelihood of future adverse event in their Fontan patients.

Detailed Description

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This is a multi-center prospective study that involves collecting data from patients as well as their cardiology providers in order to determine whether there is correlation between patient-reported quality of life assessments and clinician-identified assessments of their patients. The study also involves collecting data from the medical records of participating patients and entering it into our study database.

Conditions

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Congenital Heart Disease Single-ventricle

Study Design

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Observational Model Type

COHORT

Study Time Perspective

PROSPECTIVE

Study Groups

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Pediatric Fontan Patients

Participants ages 10 to 18 who have had Lateral Tunnel or Extracardiac Fontan procedures.

No interventions assigned to this group

Adult Fontan Patients

Participants ages 18 to 60 who have had Lateral Tunnel or Extracardiac Fontan procedures.

No interventions assigned to this group

Eligibility Criteria

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Inclusion Criteria

* Extracardiac or Lateral Funnel Fontan

Exclusion Criteria

* Currently being evaluated for or listed for cardiac transplant
* Underwent Fontan revision or conversion
* Currently pregnant
Minimum Eligible Age

10 Years

Maximum Eligible Age

60 Years

Eligible Sex

ALL

Accepts Healthy Volunteers

No

Sponsors

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New England Congenital Cardiology Association (NECCA)

UNKNOWN

Sponsor Role collaborator

Yale University

OTHER

Sponsor Role collaborator

Dartmouth College

OTHER

Sponsor Role collaborator

Connecticut Children's Medical Center

OTHER

Sponsor Role collaborator

University of Vermont

OTHER

Sponsor Role collaborator

Child Heart Associates

UNKNOWN

Sponsor Role collaborator

Congenital Heart

UNKNOWN

Sponsor Role collaborator

University of Massachusetts, Worcester

OTHER

Sponsor Role collaborator

Massachusetts General Hospital

OTHER

Sponsor Role collaborator

Boston Children's Hospital

OTHER

Sponsor Role lead

Responsible Party

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Rahul Rathod

Cardiologist

Responsibility Role PRINCIPAL_INVESTIGATOR

Principal Investigators

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Rahul Rathod, MD

Role: PRINCIPAL_INVESTIGATOR

Boston Children's Hospital

Locations

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Boston Children's Hospital

Boston, Massachusetts, United States

Site Status

Countries

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United States

References

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d'Udekem Y, Iyengar AJ, Cochrane AD, Grigg LE, Ramsay JM, Wheaton GR, Penny DJ, Brizard CP. The Fontan procedure: contemporary techniques have improved long-term outcomes. Circulation. 2007 Sep 11;116(11 Suppl):I157-64. doi: 10.1161/CIRCULATIONAHA.106.676445.

Reference Type BACKGROUND
PMID: 17846297 (View on PubMed)

Diller GP, Giardini A, Dimopoulos K, Gargiulo G, Muller J, Derrick G, Giannakoulas G, Khambadkone S, Lammers AE, Picchio FM, Gatzoulis MA, Hager A. Predictors of morbidity and mortality in contemporary Fontan patients: results from a multicenter study including cardiopulmonary exercise testing in 321 patients. Eur Heart J. 2010 Dec;31(24):3073-83. doi: 10.1093/eurheartj/ehq356. Epub 2010 Oct 7.

Reference Type BACKGROUND
PMID: 20929979 (View on PubMed)

Blume ED, Balkin EM, Aiyagari R, Ziniel S, Beke DM, Thiagarajan R, Taylor L, Kulik T, Pituch K, Wolfe J. Parental perspectives on suffering and quality of life at end-of-life in children with advanced heart disease: an exploratory study*. Pediatr Crit Care Med. 2014 May;15(4):336-42. doi: 10.1097/PCC.0000000000000072.

Reference Type BACKGROUND
PMID: 24583501 (View on PubMed)

Lakin JR, Robinson MG, Bernacki RE, Powers BW, Block SD, Cunningham R, Obermeyer Z. Estimating 1-Year Mortality for High-Risk Primary Care Patients Using the "Surprise" Question. JAMA Intern Med. 2016 Dec 1;176(12):1863-1865. doi: 10.1001/jamainternmed.2016.5928. No abstract available.

Reference Type BACKGROUND
PMID: 27695853 (View on PubMed)

Hamano J, Morita T, Inoue S, Ikenaga M, Matsumoto Y, Sekine R, Yamaguchi T, Hirohashi T, Tajima T, Tatara R, Watanabe H, Otani H, Takigawa C, Matsuda Y, Nagaoka H, Mori M, Yamamoto N, Shimizu M, Sasara T, Kinoshita H. Surprise Questions for Survival Prediction in Patients With Advanced Cancer: A Multicenter Prospective Cohort Study. Oncologist. 2015 Jul;20(7):839-44. doi: 10.1634/theoncologist.2015-0015. Epub 2015 Jun 8.

Reference Type BACKGROUND
PMID: 26054631 (View on PubMed)

Other Identifiers

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IRB-P00024716

Identifier Type: -

Identifier Source: org_study_id

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