Monitoring and integrated care coordination of patients with alpha-mannosidosis: A global Delphi consensus study.

Nathalie GuffonBarbara K BurtonCan FiciciogluMartin MagnerMercedes Gil-CamposMonica A Lopez-RodriguezParul JayakarAllan M LundGalit TalJose Elias Garcia-OrtizKarolina M StepienCarolyn EllawayWalla Al-HertaniRoberto GiuglianiSara S CatheyJulia B HennermannChristina LampeMarkey McNuttFlorian B LaglerMaurizio ScarpaV Reid SuttonNicole Muschol

Published in: Molecular genetics and metabolism (2024)

This is the first Delphi study providing internationally applicable, best-practice recommendations for monitoring patients with AM that may improve their care and well-being.

Keyphrases

healthcare
palliative care
quality improvement
primary care
clinical practice
pain management