A deep phenotyping experience: up to date in management and diagnosis of Malan syndrome in a single center surveillance report.
Marina MacchiaioloFilippo M PanfiliDavide VecchioMichaela V GonfiantiniFabiana CortellessaCristina CacioloMarcella ZollinoMaria AccadiaMarco SeriMarcello ChinaliCorrado MammìMarco TartagliaAndrea BartuliPaolo AlfieriManuela PrioloPublished in: Orphanet journal of rare diseases (2022)
Deep phenotyping has provided a more accurate characterization of the main clinical features of MALNS and allows broadening the spectrum of disease. A minimal dataset of clinical evaluations and follow-up timeline has been proposed for proper management of patients affected by this ultrarare disorder.