The Fontan outcomes network: first steps towards building a lifespan registry for individuals with Fontan circulation in the United States.

Adult Child Fontan Procedure Heart Defects, Congenital / epidemiology Humans Longevity Quality of Life Registries United States / epidemiology
Fontan improving outcomes registry single ventricle

Journal

Cardiology in the young
ISSN: 1467-1107
Titre abrégé: Cardiol Young
Pays: England
ID NLM: 9200019

Informations de publication

Date de publication:
Aug 2020
Historique:
pubmed: 9 7 2020
medline: 22 6 2021
entrez: 9 7 2020
Statut: ppublish

Résumé

The Fontan Outcomes Network was created to improve outcomes for children and adults with single ventricle CHD living with Fontan circulation. The network mission is to optimise longevity and quality of life by improving physical health, neurodevelopmental outcomes, resilience, and emotional health for these individuals and their families. This manuscript describes the systematic design of this new learning health network, including the initial steps in development of a national, lifespan registry, and pilot testing of data collection forms at 10 congenital heart centres.

Identifiants

DOI: 10.1017/S1047951120001869 PMID: 32635947
pubmed: 32635947
pii: S1047951120001869
doi: 10.1017/S1047951120001869
doi:

Types de publication

Journal Article

Langues

eng

Sous-ensembles de citation

IM

Pagination

1070-1075

Commentaires et corrections

Type : ErratumIn

Auteurs

Tarek Alsaied (T)

Heart Institute, Department of Pediatrics, Cincinnati Children's Hospital Medical Center, University of Cincinnati, Cincinnati, OH, USA.
ORCID: 0000-0002-3777-4822

Kiona Y Allen (KY)

Division of Cardiology, Ann & Robert H. Lurie Children's Hospital of Chicago, Chicago, IL, USA.
Department of Pediatrics, Feinberg Northwestern University School of Medicine, Chicago, IL, USA.

Jeffrey B Anderson (JB)

Heart Institute, Department of Pediatrics, Cincinnati Children's Hospital Medical Center, University of Cincinnati, Cincinnati, OH, USA.

Julia S Anixt (JS)

Division of Developmental and Behavioral Pediatrics, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, USA.
Department of Pediatrics, University of Cincinnati, Cincinnati, OH, USA.

David W Brown (DW)

Department of Cardiology, Boston Children's Hospital, Boston, MA, USA.
Department of Pediatrics, Harvard Medical School, Boston, MA, USA.

Frank Cetta (F)

Department of Pediatric Cardiology, The Mayo Clinic, Rochester, MN, USA.

Rachael Cordina (R)

Royal Prince Alfred Hospital, Sydney, Australia.

Yves D'udekem (Y)

Children's National Cardiac Surgery and Heart Institute, Washington, DC, USA.

Meghan Didier (M)

Sisters by Heart Organization, El Segundo, CA, USA.
The National Pediatric Cardiology Quality Improvent Collaborative, Cincinnati, OH, USA.

Salil Ginde (S)

Department of Cardiology, The Children's Hospital of Wisconsin, Milwaukee, WI, USA.

Michael V Di Maria (MV)

Heart Institute, Children's Hospital Colorado, Department of Pediatrics, University of Colorado School of Medicine, Aurora, CO, USA.

Michelle Eversole (M)

The Anderson Center for Health Systems Excellence, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, USA.

David Goldberg (D)

Department of Pediatric Cardiology, The Children's Hospital of Philadelphia, Philadelphia, PA, USA.

Bryan H Goldstein (BH)

Heart Institute, UPMC Children's Hospital of Pittsburgh, Department of Pediatrics, University of Pittsburgh School of Medicine, Pittsburgh, PA, USA.

Erin Hoffmann (E)

Additional Ventures, Palo Alto, CA, USA.

Adrienne H Kovacs (AH)

Knight Cardiovascular Institute, Oregon Health & Science University, Portland, OR, USA.

Carole Lannon (C)

The Anderson Center for Health Systems Excellence, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, USA.
American Board of Pediatrics, Chapel Hill, NC, USA.

Stacey Lihn (S)

Sisters by Heart Organization, El Segundo, CA, USA.
The National Pediatric Cardiology Quality Improvent Collaborative, Cincinnati, OH, USA.

Adam M Lubert (AM)

Heart Institute, Department of Pediatrics, Cincinnati Children's Hospital Medical Center, University of Cincinnati, Cincinnati, OH, USA.

Bradley S Marino (BS)

Division of Cardiology, Ann & Robert H. Lurie Children's Hospital of Chicago, Chicago, IL, USA.
Department of Pediatrics, Feinberg Northwestern University School of Medicine, Chicago, IL, USA.

Emily Mullen (E)

The Anderson Center for Health Systems Excellence, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, USA.
American Board of Pediatrics, Chapel Hill, NC, USA.
Data Management and Analysis Center, Division of Biostatistics and Epidemiology, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, USA.

Diane Pickles (D)

One Brave Idea at American Heart Association, Boston, MA, USA.

Rahul H Rathod (RH)

Department of Cardiology, Boston Children's Hospital, Boston, MA, USA.
Department of Pediatrics, Harvard Medical School, Boston, MA, USA.

Jack Rychik (J)

Department of Pediatric Cardiology, The Children's Hospital of Philadelphia, Philadelphia, PA, USA.

James S Tweddell (JS)

Heart Institute, Department of Pediatrics, Cincinnati Children's Hospital Medical Center, University of Cincinnati, Cincinnati, OH, USA.
Department of Cardiothoracic Surgery, Cincinnati Children's Hospital Medical Center, University of Cincinnati, Cincinnati, OH, USA.

Sharyl Wooton (S)

The Anderson Center for Health Systems Excellence, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, USA.
American Board of Pediatrics, Chapel Hill, NC, USA.

Gail Wright (G)

Department of Pediatric Cardiology, Stanford University, Palo Alto, CA, USA.

Adel Younoszai (A)

Heart Institute, Children's Hospital Colorado, Department of Pediatrics, University of Colorado School of Medicine, Aurora, CO, USA.

Tom Glenn (T)

Rady Children's Hospital, Department of Pediatric Cardiology, San Diego, California.

Alicia Wilmoth (A)

Heart Institute, Department of Pediatrics, Cincinnati Children's Hospital Medical Center, University of Cincinnati, Cincinnati, OH, USA.

Kurt Schumacher (K)

Congenital Heart Center, C.S. Mott Children's Hospital, University of Michigan, Ann Arbor, MI, USA.

Articles similaires

[Redispensing of expensive oral anticancer medicines: a practical application].

Lisanne N van Merendonk, Kübra Akgöl, Bastiaan Nuijen
1.00
Humans Antineoplastic Agents Administration, Oral Drug Costs Counterfeit Drugs

Smoking Cessation and Incident Cardiovascular Disease.

Jun Hwan Cho, Seung Yong Shin, Hoseob Kim et al.
1.00
Humans Male Smoking Cessation Cardiovascular Diseases Female

Evaluation of Low-Value Services Across Major Medicare Advantage Insurers and Traditional Medicare.

Ciara Duggan, Adam L Beckman, Ishani Ganguli et al.
1.00
Humans United States Aged Cross-Sectional Studies Medicare Part C

Effectiveness of Virtual Yoga for Chronic Low Back Pain: A Randomized Clinical Trial.

Hallie Tankha, Devyn Gaskins, Amanda Shallcross et al.
1.00
Humans Yoga Low Back Pain Female Male

Classifications MeSH

questionsmedicales.fr › Personnes › Tranches d'âge › Adulte › The Fontan outcomes network: first steps...
questionsmedicales.fr › Personnes › Tranches d'âge › Enfant › The Fontan outcomes network: first steps...
questionsmedicales.fr › Procédures de chirurgie opératoire › Procédures de chirurgie thoracique › Procédures de chirurgie cardiaque › Procédures de Norwood › Procédure de Fontan › The Fontan outcomes network: first steps...
questionsmedicales.fr › Malformations et maladies congénitales, héréditaires et néonatales › Malformations › Malformations cardiovasculaires › Cardiopathies congénitales › The Fontan outcomes network: first steps...
questionsmedicales.fr › Eucaryotes › Animaux › Chordés › Vertébrés › Mammifères › Eutheria › Primates › Haplorhini › Catarrhini › Hominidae › Humains › The Fontan outcomes network: first steps...
questionsmedicales.fr › Phénomènes physiologiques › Longévité › The Fontan outcomes network: first steps...
questionsmedicales.fr › Environnement et santé publique › Santé publique › Mesures épidémiologiques › Démographie › État de santé › Qualité de vie › The Fontan outcomes network: first steps...
questionsmedicales.fr › Environnement et santé publique › Santé publique › Méthodes épidémiologiques › Collecte de données › Enregistrements › The Fontan outcomes network: first steps...
questionsmedicales.fr › Régions géographiques › Amériques › Amérique du Nord › États-Unis › The Fontan outcomes network: first steps...