Cargando…

A preliminary study of telemedicine for patients with hepatic glycogen storage disease and their healthcare providers: from bedside to home site monitoring

BACKGROUND: The purpose of this project was to develop a telemedicine platform that supports home site monitoring and integrates biochemical, physiological, and dietary parameters for individual patients with hepatic glycogen storage disease (GSD). METHODS AND RESULTS: The GSD communication platform...

Descripción completa

Detalles Bibliográficos
Autores principales:	Hoogeveen, Irene J., Peeks, Fabian, de Boer, Foekje, Lubout, Charlotte M. A., de Koning, Tom J., te Boekhorst, Sebastiaan, Zandvoort, Robert-Jan, Burghard, Rob, van Spronsen, Francjan J., Derks, Terry G. J.
Formato:	Online Artículo Texto
Lenguaje:	English
Publicado:	Springer Netherlands 2018
Materias:	Glycogen Storage Disease
Acceso en línea:	https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6326981/ https://www.ncbi.nlm.nih.gov/pubmed/29600495 http://dx.doi.org/10.1007/s10545-018-0167-2

Ejemplares similares

A retrospective in‐depth analysis of continuous glucose monitoring datasets for patients with hepatic glycogen storage disease: Recommended outcome parameters for glucose management
por: Peeks, Fabian, et al.
Publicado: (2021)

A generic emergency protocol for patients with inborn errors of metabolism causing fasting intolerance: A retrospective, single‐center study and the generation of www.emergencyprotocol.net
por: Rossi, Alessandro, et al.
Publicado: (2021)

Clinical and biochemical heterogeneity between patients with glycogen storage disease type IA: the added value of CUSUM for metabolic control
por: Peeks, Fabian, et al.
Publicado: (2017)

A retrospective study of eating and psychosocial problems in patients with hepatic glycogen storage diseases and idiopathic ketotic hypoglycemia: Towards a standard set of patient‐reported outcome measures
por: Venema, Annieke, et al.
Publicado: (2021)

The potential of dietary treatment in patients with glycogen storage disease type IV
por: Derks, Terry G. J., et al.
Publicado: (2020)

The multiple faces of urinary glucose tetrasaccharide as biomarker for patients with hepatic glycogen storage diseases
por: Heiner-Fokkema, M. Rebecca, et al.
Publicado: (2020)

Towards values‐based healthcare for inherited metabolic disorders: An overview of current practices for persons with liver glycogen storage disease and fatty acid oxidation disorders
por: Venema, Annieke, et al.
Publicado: (2022)

Dietary lipids in glycogen storage disease type III: A systematic literature study, case studies, and future recommendations
por: Rossi, Alessandro, et al.
Publicado: (2020)

Effects of acute nutritional ketosis during exercise in adults with glycogen storage disease type IIIa are phenotype‐specific: An investigator‐initiated, randomized, crossover study
por: Hoogeveen, Irene J., et al.
Publicado: (2020)

A Prospective Study on Continuous Glucose Monitoring in Glycogen Storage Disease Type Ia: Toward Glycemic Targets
por: Rossi, Alessandro, et al.
Publicado: (2022)

Next-generation glycogen storage diseases
por: Derks, Terry G. J., et al.
Publicado: (2018)

Communication of an Abnormal Metabolic New-Born Screening Result in The Netherlands: The Parental Perspective
por: Haitjema, Sietske, et al.
Publicado: (2022)

Glycogen Storage Disease Type Ia: Current Management Options, Burden and Unmet Needs
por: Derks, Terry G. J., et al.
Publicado: (2021)

Mild hyperphenylalaninemia: to treat or not to treat
por: van Spronsen, Francjan J.
Publicado: (2011)

Single amino acid supplementation in aminoacidopathies: a systematic review
por: van Vliet, Danique, et al.
Publicado: (2014)

Lipids in hepatic glycogen storage diseases: pathophysiology, monitoring of dietary management and future directions
por: Derks, Terry G. J., et al.
Publicado: (2015)

High childhood serum triglyceride concentrations associate with hepatocellular adenoma development in patients with glycogen storage disease type Ia
por: Haring, Martijn P.D., et al.
Publicado: (2022)

Research priorities for liver glycogen storage disease: An international priority setting partnership with the James Lind Alliance
por: Peeks, Fabian, et al.
Publicado: (2019)

Glycogen storage disease type III: diagnosis, genotype, management, clinical course and outcome
por: Sentner, Christiaan P., et al.
Publicado: (2016)

Glycogen storage disease type Ia: Adult presentation with microcytic anemia and liver adenomas
por: Moest, Wouter, et al.
Publicado: (2018)

Acute exercise in treated phenylketonuria patients: Physical activity and biochemical response
por: Mazzola, Priscila Nicolao, et al.
Publicado: (2015)

Biomarkers of Micronutrients in Regular Follow-Up for Tyrosinemia Type 1 and Phenylketonuria Patients
por: van Vliet, Kimber, et al.
Publicado: (2019)

Impaired Very‐Low‐Density Lipoprotein catabolism links hypoglycemia to hypertriglyceridemia in Glycogen Storage Disease type Ia
por: Hoogerland, Joanne A., et al.
Publicado: (2021)

Important Lessons on Long-Term Stability of Amino Acids in Stored Dried Blood Spots
por: Dijkstra, Allysa M., et al.
Publicado: (2023)

Patient‐reported outcomes on empagliflozin treatment in glycogen storage disease type Ib: An international questionnaire study
por: Grünert, Sarah C., et al.
Publicado: (2023)

Large neutral amino acids in the treatment of PKU: from theory to practice
por: van Spronsen, Francjan J., et al.
Publicado: (2010)

Disparities from bedside to “webside”: barriers to achieving equity in telemedicine in obstetrics
por: Udegbe, Beverly C., et al.
Publicado: (2023)

Lysosomal glycogen accumulation in Pompe disease results in disturbed cytoplasmic glycogen metabolism
por: Canibano‐Fraile, Rodrigo, et al.
Publicado: (2022)

Preventive use of nitisinone in alkaptonuria
por: Wolffenbuttel, Bruce H. R., et al.
Publicado: (2021)

Pre-attentive processing in children with early and continuously-treated PKU. Effects of concurrent Phe level and lifetime dietary control
por: de Sonneville, Leo M. J., et al.
Publicado: (2011)

Optimising amino acid absorption: essential to improve nitrogen balance and metabolic control in phenylketonuria
por: MacDonald, Anita, et al.
Publicado: (2018)

Protein targeting to glycogen is a master regulator of glycogen synthesis in astrocytes
por: Ruchti, E., et al.
Publicado: (2016)

Bone mineral density is within normal range in most adult phenylketonuria patients
por: Lubout, Charlotte M. A., et al.
Publicado: (2020)

Improved inflammatory bowel disease, wound healing and normal oxidative burst under treatment with empagliflozin in glycogen storage disease type Ib
por: Grünert, Sarah C., et al.
Publicado: (2020)

A Microbial Community Ecology Perspective on the Gut-Microbiome-Brain Axis
por: van der Goot, Els, et al.
Publicado: (2020)

Glycogen storage disease type 1a is associated with disturbed vitamin A metabolism and elevated serum retinol levels
por: Saeed, Ali, et al.
Publicado: (2020)

Phenylketonuria: reduced tyrosine brain influx relates to reduced cerebral protein synthesis
por: de Groot, Martijn J, et al.
Publicado: (2013)

A triple-blinded crossover study to evaluate the short-term safety of sweet manioc starch for the treatment of glycogen storage disease type Ia
por: Monteiro, Vaneisse C. L., et al.
Publicado: (2021)

Telemedicine in heart failure—more than nice to have?
por: Eurlings, C. G. M. J., et al.
Publicado: (2018)

Glycogen
Publicado: (1872)

Cannot write session to /tmp/vufind_sessions/sess_hhbev32rqlnvlpcd9b5vov81i0