Data monitoring roadmap. The experience of the Italian Multiple Sclerosis and Related Disorders Register.
Multiple sclerosis
Quality control
Quality indicators
Real world data
Register
Journal
Neurological sciences : official journal of the Italian Neurological Society and of the Italian Society of Clinical Neurophysiology
ISSN: 1590-3478
Titre abrégé: Neurol Sci
Pays: Italy
ID NLM: 100959175
Informations de publication
Date de publication:
Nov 2023
Nov 2023
Historique:
received:
20
02
2023
accepted:
24
05
2023
medline:
23
10
2023
pubmed:
14
6
2023
entrez:
13
6
2023
Statut:
ppublish
Résumé
Over the years, disease registers have been increasingly considered a source of reliable and valuable population studies. However, the validity and reliability of data from registers may be limited by missing data, selection bias or data quality not adequately evaluated or checked. This study reports the analysis of the consistency and completeness of the data in the Italian Multiple Sclerosis and Related Disorders Register. The Register collects, through a standardized Web-based Application, unique patients. Data are exported bimonthly and evaluated to assess the updating and completeness, and to check the quality and consistency. Eight clinical indicators are evaluated. The Register counts 77,628 patients registered by 126 centres. The number of centres has increased over time, as their capacity to collect patients. The percentages of updated patients (with at least one visit in the last 24 months) have increased from 33% (enrolment period 2000-2015) to 60% (enrolment period 2016-2022). In the cohort of patients registered after 2016, there were ≥ 75% updated patients in 30% of the small centres (33), in 9% of the medium centres (11), and in all the large centres (2). Clinical indicators show significant improvement for the active patients, expanded disability status scale every 6 months or once every 12 months, visits every 6 months, first visit within 1 year and MRI every 12 months. Data from disease registers provide guidance for evidence-based health policies and research, so methods and strategies ensuring their quality and reliability are crucial and have several potential applications.
Identifiants
pubmed: 37311951
doi: 10.1007/s10072-023-06876-9
pii: 10.1007/s10072-023-06876-9
pmc: PMC10264214
doi:
Types de publication
Journal Article
Langues
eng
Sous-ensembles de citation
IM
Pagination
4001-4011Investigateurs
U Aguglia
(U)
M P Amato
(MP)
A L Ancona
(AL)
B Ardito
(B)
C Avolio
(C)
R Balgera
(R)
P Banfi
(P)
V Barcella
(V)
P Barone
(P)
P Bellantonio
(P)
A Berardinelli
(A)
R Bergamaschi
(R)
P Bertora
(P)
M Bianchi
(M)
P Bramanti
(P)
V Brescia Morra
(V)
G Brichetto
(G)
A M Brioschi
(AM)
M Buccafusca
(M)
S Bucello
(S)
V Busillo
(V)
B Calchetti
(B)
R Cantello
(R)
M Capobianco
(M)
F Capone
(F)
L Capone
(L)
D Cargnelutti
(D)
M Carozzi
(M)
E Cartechini
(E)
G Cavaletti
(G)
P Cavalla
(P)
M G Celani
(MG)
R Clerici
(R)
M Clerico
(M)
E Cocco
(E)
V Torri Clerici
(V)
M G Coniglio
(MG)
A Conte
(A)
F Corea
(F)
S Cottone
(S)
P Crociani
(P)
F D'Andrea
(F)
M C Danni
(MC)
G De Luca
(G)
D de Pascalis
(D)
M De Riz
(M)
F De Robertis
(F)
G De Rosa
(G)
N De Stefano
(N)
M Della Corte
(M)
A Di Sapio
(A)
R Docimo
(R)
M Falcini
(M)
N Falcone
(N)
S Fermi
(S)
E Ferraro
(E)
M T Ferrò
(MT)
M Fortunato
(M)
M Foschi
(M)
A Gajofatto
(A)
A Gallo
(A)
P Gallo
(P)
M Gatto
(M)
P Gazzola
(P)
A Giordano
(A)
F Granella
(F)
M G Grasso
(MG)
Lme Grimaldi
(L)
P Iaffaldano
(P)
P Immovilli
(P)
D Imperiale
(D)
M Inglese
(M)
R Iodice
(R)
S Leva
(S)
V Leuzzi
(V)
A Lugaresi
(A)
G Lus
(G)
D Maimone
(D)
L Mancinelli
(L)
G T Maniscalco
(GT)
G A Marfia
(GA)
L Margari
(L)
F Marinelli
(F)
B Marini
(B)
A Marson
(A)
N Mascoli
(N)
L Massacesi
(L)
F Melani
(F)
M Merello
(M)
C Fioretti
(C)
M Mirabella
(M)
S Montepietra
(S)
D Nasuelli
(D)
P Nicolao
(P)
L Pasquali
(L)
F Passantino
(F)
F Patti
(F)
C Pecori
(C)
M Peresson
(M)
I Pesci
(I)
C Piantadosi
(C)
M L Piras
(ML)
M Pizzorno
(M)
K Plewnia
(K)
C Pozzilli
(C)
A Protti
(A)
R Quatrale
(R)
S Realmuto
(S)
G Ribizzi
(G)
S Rinalduzzi
(S)
A Rini
(A)
S Romano
(S)
M Filippi
(M)
M Ronzoni
(M)
P Rossi
(P)
M Rovaris
(M)
G Salemi
(G)
G Santangelo
(G)
M Santangelo
(M)
A Leone
(A)
P Sarchielli
(P)
L Sinisi
(L)
D Ferraro
(D)
C Solaro
(C)
D Spitaleri
(D)
S Strumia
(S)
T Tassinari
(T)
G Santuccio
(G)
C Tortorella
(C)
R Totaro
(R)
A Tozzo
(A)
G Trivelli
(G)
G Turano
(G)
M Ulivelli
(M)
P Valentino
(P)
S Venturi
(S)
M Vianello
(M)
M Zaffaroni
(M)
R Zarbo
(R)
Informations de copyright
© 2023. The Author(s).
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