title: The impact of a model-based clinical regional registry for attention-deficit hyperactivity disorder.
abstract: This article describes the development and clinical impact of the Italian Regional ADHD Registry, aimed at collecting and monitoring diagnostic and therapeutic pathways of care for attention-deficit hyperactivity disorder children and adolescents, launched by the Italian Lombardy Region in June 2011. In particular, the model-based software used to run the registry and manage clinical care data acquisition and monitoring, is described. This software was developed using the PROSAFE programme, which is already used for data collection in many Italian intensive care units, as a stand-alone interface case report form. The use of the attention-deficit hyperactivity disorder regional registry led to an increase in the appropriateness of the clinical management of all patients included in the registry, proving to be an important instrument in ensuring an appropriate healthcare strategy for children and adolescents with attention-deficit/hyperactivity disorder.
authors.affiliation: IRCCS - Istituto di Ricerche Farmacologiche Mario Negri, Milan, Italy.
authors.forename: Michele
authors.initials: M
authors.lastname: Zanetti
authors.affiliation: IRCCS - Istituto di Ricerche Farmacologiche Mario Negri, Milan, Italy.
authors.forename: Massimo
authors.initials: M
authors.lastname: Cartabia
authors.affiliation: IRCCS - Istituto di Ricerche Farmacologiche Mario Negri, Milan, Italy.
authors.forename: Anna
authors.initials: A
authors.lastname: Didoni
authors.affiliation: IRCCS - Istituto di Ricerche Farmacologiche Mario Negri, Milan, Italy.
authors.forename: Filomena
authors.initials: F
authors.lastname: Fortinguerra
authors.affiliation: IRCCS - Istituto di Ricerche Farmacologiche Mario Negri, Milan, Italy.
authors.forename: Laura
authors.initials: L
authors.lastname: Reale
authors.affiliation: IRCCS - Istituto di Ricerche Farmacologiche Mario Negri, Milan, Italy.
authors.forename: Matteo
authors.initials: M
authors.lastname: Mondini
authors.affiliation: IRCCS - Istituto di Ricerche Farmacologiche Mario Negri, Milan, Italy.
authors.forename: Maurizio
authors.initials: M
authors.lastname: Bonati
mesh_terms: D000293:Adolescent; D000069445:Atomoxetine Hydrochloride / Q000009:adverse effects / Q000627:therapeutic use; D001289:Attention Deficit Disorder with Hyperactivity / Q000175:diagnosis / Q000453:epidemiology*; D002648:Child; D002675:Child, Preschool; D057286:Electronic Health Records / Q000639:trends; D005260:Female; D066275:Health Information Exchange / Q000592:standards* / Q000639:trends; D006801:Humans; D007558:Italy / Q000453:epidemiology; D008297:Male; D008490:Medical Informatics / Q000379:methods / Q000639:trends; D008774:Methylphenidate / Q000009:adverse effects / Q000627:therapeutic use; D011619:Psychotropic Drugs / Q000009:adverse effects / Q000627:therapeutic use; D012042:Registries / Q000592:standards* / Q000706:statistics & numerical data
chemical_list: D011619:Psychotropic Drugs; D008774:Methylphenidate; D000069445:Atomoxetine Hydrochloride
keywords: adolescent; attention deficit disorder with hyperactivity; child; health information systems; registries