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1. The Italian multiple sclerosis register

Author

Trojano, M, Bergamaschi, R, Amato, M, Comi, G, Ghezzi, A, Lepore, V, Marrosu, M, Mosconi, P, Patti, F, Ponzio, M, Zaratin, P, Battaglia, M, Acquistapace, D, Aguglia, U, Annunziata, P, Ardito, B, Avolio, C, Balgera, R, Bandini, F, Banfi, P, Barone, P, Bellantonio, P, Bertolotto, A, Bertora, P, Bombardi, R, Bosco Zimatore, G, Bossio, R, Bramanti, P, Brescia Morra, V, Brioschi, A, Bruzzone, M, Buccafusca, M, Busillo, V, Caneve, G, Caniatti, L, Capone, L, Capone, F, Cappellani, A, Cargnelutti, D, Cavaletti, G, Cavalla, P, Celani, M, Centonze, D, Chiveri, L, Clerici, R, Clerico, M, Cocco, E, Comi, C, Coniglio, M, Cordera, S, Corea, F, Cortese, A, Costantino, G, Cottone, S, Crociani, P, D’Andrea, F, Danni, M, De Luca, G, de Pascalis, D, De Robertis, F, De Stefano, N, Di Battista, G, Di Napoli, M, Falcini, M, Fausto, F, Ferrò, M, Florio, C, Fortunato, M, Frittelli, C, Galgani, S, Gallo, P, Gatto, M, Gazzola, P, Geda, C, Giordano, A, Granella, F, Grasso, M, Grimaldi, L, Imperiale, D, Lo Russo, L, Logullo, F, Lugaresi, A, Lus, G, Maccarrone, G, Maimone, D, Malagù, S, Marconi, R, Maritato, P, Massacesi, L, Mazzoni, M, Meucci, G, Mirabella, M, Montepietra, S, Nasuelli, D, Neri, W, Orefice, G, Parodi, S, Pasquali, L, Passarella, B, Peresson, M, Perla, F, Pesci, I, Piantadosi, C, Piras, M, Pizio, N, Pozzilli, C, Protti, A, Pugliatti, M, Quatrale, R, Ragno, M, Rezzonico, M, Ribizzi, G, Riva, M, Ronzoni, M, Rosso, M, Rottoli, M, Rovaris, M, Salemi, G, Salvetti, M, Santangelo, M, Santangelo, G, Santuccio, G, Sarchielli, P, Scarpini, E, Sechi, G, Severi, S, Sinisi, L, Sola, P, Spitaleri, D, Tassinari, T, Tedeschi, G, Tonietti, S, Torri Clerici, V, Totaro, R, Traccis, S, Turla, M, Uccelli, A, Ulivelli, M, Valentino, P, Valeriani, M, Venturi, S, Vianello, M, Zaffaroni, M, Trojano, Maria, Bergamaschi, Roberto, Amato, Maria Pia, Comi, Giancarlo, Ghezzi, Angelo, Lepore, Vito, Marrosu, Maria Giovanna, Mosconi, Paola, Patti, Francesco, Ponzio, Michela, Zaratin, Paola, Battaglia, Mario Alberto, Acquistapace, D., Aguglia, U., Amato, M. P., Annunziata, P., Ardito, B., Avolio, C., Balgera, R., Bandini, F., Banfi, P., Barone, P., Bellantonio, P., Bergamaschi, R., Bertolotto, A., Bertora, P., Bombardi, R., Bosco Zimatore, G., Bossio, R. B., Bramanti, P., Brescia Morra, V., Brioschi, A. M., Bruzzone, M., Buccafusca, M., Busillo, V., Caneve, G., Caniatti, L. M., Capone, L., Capone, F., Cappellani, A., Cargnelutti, D., Cavaletti, G., Cavalla, P., Celani, M. G., Centonze, D., Chiveri, L., Clerici, R., Clerico, M., Cocco, E., Comi, G., Comi, C., Coniglio, M. G., Cordera, S., Corea, F., Cortese, A., Costantino, G., Cottone, S., Crociani, P., D’Andrea, F., Danni, M. C., De Luca, G., de Pascalis, D., De Robertis, F., De Stefano, N., Di Battista, G., Di Napoli, M., Falcini, M., Fausto, F., Ferrò, M. T., Florio, C., Fortunato, M., Frittelli, C., Galgani, S., Gallo, P., Gatto, M., Gazzola, P., Geda, C., Giordano, A., Granella, F., Grasso, M. G., Grimaldi, L. M. E., Imperiale, D., Lo Russo, L., Logullo, F. O., Lugaresi, A., Lus, G., Maccarrone, G., Maimone, D., Malagù, S., Marconi, R., Maritato, P., Massacesi, L., Mazzoni, M., Meucci, G., Mirabella, M., Montepietra, S., Nasuelli, D., Neri, W., Orefice, G., Parodi, S., Pasquali, L., Passarella, B., Patti, F., Peresson, M., Perla, F., Pesci, I., Piantadosi, C., Piras, M. L., Pizio, N. R., Pozzilli, C., Protti, A., Pugliatti, M., Quatrale, R., Ragno, M., Rezzonico, M., Ribizzi, G., Riva, M., Ronzoni, M., Rosso, M. G., Rottoli, M., Rovaris, M., Salemi, G., Salvetti, M., Santangelo, M., Santangelo, G., Santuccio, G., Sarchielli, P., Scarpini, E., Sechi, G. P., Severi, S., Sinisi, L., Sola, P., Spitaleri, D., Tassinari, T., Tedeschi, G., Tonietti, S., Torri Clerici, V., Totaro, R., Traccis, S., Trojano, M., Turla, M., Uccelli, A., Ulivelli, M., Valentino, P., Valeriani, M., Venturi, S., Vianello, M., Zaffaroni, M., Trojano, M, Bergamaschi, R, Amato, M, Comi, G, Ghezzi, A, Lepore, V, Marrosu, M, Mosconi, P, Patti, F, Ponzio, M, Zaratin, P, Battaglia, M, Acquistapace, D, Aguglia, U, Annunziata, P, Ardito, B, Avolio, C, Balgera, R, Bandini, F, Banfi, P, Barone, P, Bellantonio, P, Bertolotto, A, Bertora, P, Bombardi, R, Bosco Zimatore, G, Bossio, R, Bramanti, P, Brescia Morra, V, Brioschi, A, Bruzzone, M, Buccafusca, M, Busillo, V, Caneve, G, Caniatti, L, Capone, L, Capone, F, Cappellani, A, Cargnelutti, D, Cavaletti, G, Cavalla, P, Celani, M, Centonze, D, Chiveri, L, Clerici, R, Clerico, M, Cocco, E, Comi, C, Coniglio, M, Cordera, S, Corea, F, Cortese, A, Costantino, G, Cottone, S, Crociani, P, D’Andrea, F, Danni, M, De Luca, G, de Pascalis, D, De Robertis, F, De Stefano, N, Di Battista, G, Di Napoli, M, Falcini, M, Fausto, F, Ferrò, M, Florio, C, Fortunato, M, Frittelli, C, Galgani, S, Gallo, P, Gatto, M, Gazzola, P, Geda, C, Giordano, A, Granella, F, Grasso, M, Grimaldi, L, Imperiale, D, Lo Russo, L, Logullo, F, Lugaresi, A, Lus, G, Maccarrone, G, Maimone, D, Malagù, S, Marconi, R, Maritato, P, Massacesi, L, Mazzoni, M, Meucci, G, Mirabella, M, Montepietra, S, Nasuelli, D, Neri, W, Orefice, G, Parodi, S, Pasquali, L, Passarella, B, Peresson, M, Perla, F, Pesci, I, Piantadosi, C, Piras, M, Pizio, N, Pozzilli, C, Protti, A, Pugliatti, M, Quatrale, R, Ragno, M, Rezzonico, M, Ribizzi, G, Riva, M, Ronzoni, M, Rosso, M, Rottoli, M, Rovaris, M, Salemi, G, Salvetti, M, Santangelo, M, Santangelo, G, Santuccio, G, Sarchielli, P, Scarpini, E, Sechi, G, Severi, S, Sinisi, L, Sola, P, Spitaleri, D, Tassinari, T, Tedeschi, G, Tonietti, S, Torri Clerici, V, Totaro, R, Traccis, S, Turla, M, Uccelli, A, Ulivelli, M, Valentino, P, Valeriani, M, Venturi, S, Vianello, M, Zaffaroni, M, Trojano, Maria, Bergamaschi, Roberto, Amato, Maria Pia, Comi, Giancarlo, Ghezzi, Angelo, Lepore, Vito, Marrosu, Maria Giovanna, Mosconi, Paola, Patti, Francesco, Ponzio, Michela, Zaratin, Paola, Battaglia, Mario Alberto, Acquistapace, D., Aguglia, U., Amato, M. P., Annunziata, P., Ardito, B., Avolio, C., Balgera, R., Bandini, F., Banfi, P., Barone, P., Bellantonio, P., Bergamaschi, R., Bertolotto, A., Bertora, P., Bombardi, R., Bosco Zimatore, G., Bossio, R. B., Bramanti, P., Brescia Morra, V., Brioschi, A. M., Bruzzone, M., Buccafusca, M., Busillo, V., Caneve, G., Caniatti, L. M., Capone, L., Capone, F., Cappellani, A., Cargnelutti, D., Cavaletti, G., Cavalla, P., Celani, M. G., Centonze, D., Chiveri, L., Clerici, R., Clerico, M., Cocco, E., Comi, G., Comi, C., Coniglio, M. G., Cordera, S., Corea, F., Cortese, A., Costantino, G., Cottone, S., Crociani, P., D’Andrea, F., Danni, M. C., De Luca, G., de Pascalis, D., De Robertis, F., De Stefano, N., Di Battista, G., Di Napoli, M., Falcini, M., Fausto, F., Ferrò, M. T., Florio, C., Fortunato, M., Frittelli, C., Galgani, S., Gallo, P., Gatto, M., Gazzola, P., Geda, C., Giordano, A., Granella, F., Grasso, M. G., Grimaldi, L. M. E., Imperiale, D., Lo Russo, L., Logullo, F. O., Lugaresi, A., Lus, G., Maccarrone, G., Maimone, D., Malagù, S., Marconi, R., Maritato, P., Massacesi, L., Mazzoni, M., Meucci, G., Mirabella, M., Montepietra, S., Nasuelli, D., Neri, W., Orefice, G., Parodi, S., Pasquali, L., Passarella, B., Patti, F., Peresson, M., Perla, F., Pesci, I., Piantadosi, C., Piras, M. L., Pizio, N. R., Pozzilli, C., Protti, A., Pugliatti, M., Quatrale, R., Ragno, M., Rezzonico, M., Ribizzi, G., Riva, M., Ronzoni, M., Rosso, M. G., Rottoli, M., Rovaris, M., Salemi, G., Salvetti, M., Santangelo, M., Santangelo, G., Santuccio, G., Sarchielli, P., Scarpini, E., Sechi, G. P., Severi, S., Sinisi, L., Sola, P., Spitaleri, D., Tassinari, T., Tedeschi, G., Tonietti, S., Torri Clerici, V., Totaro, R., Traccis, S., Trojano, M., Turla, M., Uccelli, A., Ulivelli, M., Valentino, P., Valeriani, M., Venturi, S., Vianello, M., and Zaffaroni, M.

Abstract

The past decade has seen extraordinary increase in worldwide availability of and access to several large multiple sclerosis (MS) databases and registries. MS registries represent powerful tools to provide meaningful information on the burden, natural history, and long-term safety and effectiveness of treatments. Moreover, patients, physicians, industry, and policy makers have an active interest in real-world observational studies based on register data, as they have the potential to answer the questions that are most relevant to daily treatment decision-making. In 2014, the Italian MS Foundation, in collaboration with the Italian MS clinical centers, promoted and funded the creation of the Italian MS Register, a project in continuity with the existing Italian MS Database Network set up from 2001. Main objective of the Italian MS Register is to create an organized multicenter structure to collect data of all MS patients for better defining the disease epidemiology, improving quality of care, and promoting research projects in high-priority areas. The aim of this article is to present the current framework and network of the Italian MS register, including the methodology used to improve the quality of data collection and to facilitate the exchange of data and the collaboration among national and international groups.

Published
2019

14. Epidemiology of motor neuron disease in two Italian provinces. Analysis of secular trend and geographic distribution

Author

Adriano Chio, Brignolio, F., Meineri, P., Rosso, M. G., and Schiffer, D.

Subjects
Male, Motor Neurons, Italy, Space-Time Clustering, Humans, Female, epidemiology, Neuromuscular Diseases, Middle Aged, Amyotrophic lateral sclerosis, Aged, Demography
Abstract

Incidence and prevalence rates of motor neuron disease in two Italian provinces (Asti and Cuneo, Piedmont region) in the period 1971 through 1985 were estimated. The data were omogeneous in the investigated area, but an increasing incidence of the disease during the period studied was found, particularly in older age groups and in females. An increasing trend in mean age of onset of symptoms was also found.

Published
1989

15. Risk factors for a first symptomatic epileptic seizure

Author

Bogliun, G., Shrascini, S., Leone, M., Tonini, C., Beghi, E., Bottacchi, E., Sironi, L., Corso, G., Brignolio, F., Duc, E., Saracco, G., Nardozza, V., Gionco, M., Grasso, E., Meineri, P., Rosso, M. G., Morandi, C., Tottola, M., Grassi, F., Gambaro, P., Mutani, R., Terazzi, E., Grieco, E., Naldi, P., Buft A, C., Rocci, E., Badino, R., Tassinari, T., Doriguyj, T., Favero, M., Bacci, R., Labate, C., Sacerdote, I., Gentile, S., Chianale, G., Morgando, E., Cremo, R., Paolo Benna, Bonzanino, C., Ruhino, R., Provera, P., and Brite, C.

16. Multicenter case-control study of risk factors for a first symptomatic epileptic seizure,Studio multicentrico caso-controllo sui fattori di rischio per prima crisi epilettica sintomatica

Author

Sbrascini, S., Leone, M., Tonini, C., Beghi, E., Bottacchi, E., Sironi, L., Corso, G., Brignolio, E., Duc, E., Saracco, G., Nardozza, V., Gionco, M., Grasso, E., Meineri, P., Rosso, M. G., Morandi, C., Tottola, M., Grassi, E., Gambaro, P., Bogliun, G., Mutani, R., Terazzi, E., Grieco, E., Naldi, P., Buffa, C., Rocci, E., Badino, R., Tassinari, T., Doriguzzi, T., Favero, M., Bacci, R., Labate, C., Sacerdote, I., Gentile, S., Chianale, G., Morgando, E., Cremo, R., Paolo Benna, Bonzanino, C., Rubino, R., Provera, P., and Brite, C.

17. The costs of multiple sclerosis: A cross-sectional, multicenter cost-of-illness study in Italy

Author

Amato, M. P., Battaglia, M. A., Caputo, D., Fattore, G., Gerzeli, S., Pitaro, M., Reggio, A., Trojano, M., Piazza, G., Valiani, R., Coniglio, M. G., Paciello, M., Ciccarelli, M., Branca, F., Olivieri, R. L., Sibilia, G., Orefice, G., Campese, O., Mandarini, A., Montanari, E., Ludovico, L., Motti, L., Sabadini, R., Stecchi, S., Scandellari, C., Tola, M. R., Gragnaniello, D., Cargnelutti, D., Bergonzi, P., Falcone, M., Gigli, L., Zadini, A., Pelizon, C., Galgani, S., Fele, M. R., Massaro, A. R., Pascalis, D., Nocentini, U., Pozzilli, C., Mancini, A., Spadaro, M., Fantozzi, R., Solaro, C., giovanni luigi mancardi, Tartaglione, A., Parodi, S., Capra, R., Galluzzi, S., Cosi, V., Bergamaschi, R., Martinelli, V., Gironi, M., Scarlato, G., Scarpini, E., Zibetti, A., Baldini, S. M., Lugaresi, A., Iarlori, C., Marzoli, F., Carolei, A., Totaro, R., Viti, B., Taus, C., Melato, M., Gasco, P., Colla, L., Morgando, D., Di Sapio, A., Perla, F., Rosso, M. G., Giuliani, F., Paolicelli, D., Simone, P., Cioffi, R., Patti, F., Savettieri, G., Salemi, G., Conte, S., Annunziata, P., Pieri, S., Bardi, C., Marcacci, G., Meucci, G., Lombardo, F., Lovaste, M. G., Orrico, D., Sarchielli, P., Urciuoli, R., Giuglietti, M., Tavolato, B., Marangoni, S., Bortolon, F., and Toso, V.

18. A study of prognostic factors in motor neuron disease

Author

Schiffer, D., Brignolio, F., Adriano Chio, Leone, M., and Rosso, M. G.

Subjects
Male, Motor Neurons, Muscular Atrophy, Italy, Actuarial Analysis, Bulbar Palsy, Progressive, Humans, Female, Neuromuscular Diseases, prognosis, Amyotrophic lateral sclerosis

20. Predictors of attack severity and duration in multiple sclerosis: a prospective study.

Author

Naldi P, Collimedaglia L, Vecchio D, Rosso MG, Perl F, Stecco A, Monaco F, and Leone MA

Abstract

Objective: To evaluate predictors of severity and duration of early Multiple Sclerosis (MS) attacks., Methods: We analyzed 248 attacks in 95 patients in a prospective study. Severity: the difference between the EDSS score at the day of maximum worsening and the EDSS score before the onset of the attack., Duration: the time between the date of onset of the first symptom and the date of maximum improvement of the last symptom., Results: The number of involved Functional Systems (FS), FS type (brainstem and pyramidal), and total attack duration were linked to severity. Number of FS involved, FS type (sphincteric and sensory), and severity of the attack were related to duration. Neither severity nor duration were correlated to other predictors: gender, age and season at attack onset, speed of onset, infections in the preceding month, age at first attack, season of birth and first attack, CSF examination, first brain MRI, recovery from the first attack. In the multivariate analysis, the Odds Ratio (OR) and Confidence Intervals (CI) for severe attacks was 3.6, 1.7-7.7 for involvement of pyramidal FS, 2.6, 1.2-6.0 for brainstem and 2.5, 1.2-5.3 for long attack duration. Sphincteric (4.4; 1.7-11.0) and sensory FS (1.8; 1.0-3.2) were the only variables explaining duration. The probability of a second moderate/severe or long attack was not influenced by severity or duration of the first., Conclusion: FS are predictive of severity and duration of early MS attacks. Severity and duration of the first attack do not predict severity and duration of the second.

Published
2011
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21. [The diagnostic course in patients with hereditary ataxias and hereditary spastic paraparesis].

Author

Leone M, Bottacchi E, D'Ambrosio R, Mittino D, Rosso MG, and Brignolio F

Subjects
Age Factors, Chi-Square Distribution, Friedreich Ataxia diagnosis, Friedreich Ataxia epidemiology, Humans, Italy epidemiology, Referral and Consultation statistics & numerical data, Sex Factors, Spastic Paraplegia, Hereditary epidemiology, Spinocerebellar Degenerations epidemiology, Surveys and Questionnaires, Time Factors, Spastic Paraplegia, Hereditary diagnosis, Spinocerebellar Degenerations diagnosis
Abstract

A postal questionnaire was sent to all patients affected by hereditary ataxias and hereditary spastic paraparesis resident in the province of Turin (Italy) to study their diagnostic process. A 61% response rate was obtained. The mean time interval between onset and diagnosis was 6 years (1 to 32 years). The percentage of late diagnoses dropped from 59% before 1959 to 19% after 1970, mostly because a reduction of the interval between symptom onset and the first contact with the general practitioner. The onset with dysarthria and ataxia led to earlier neurologic consultation, but the whole time requested for the diagnosis was not modified. A reduction of the time needed for the diagnostic process may be important to address the family to an early genetic counselling.

Published
1992

22. Friedreich's ataxia: a descriptive epidemiological study in an Italian population.

Author

Leone M, Brignolio F, Rosso MG, Curtoni ES, Moroni A, Tribolo A, and Schiffer D

Subjects
Adolescent, Adult, Child, Chromosome Aberrations genetics, Chromosome Disorders, Consanguinity, Cross-Sectional Studies, Female, Friedreich Ataxia genetics, Genes, Recessive, Humans, Incidence, Italy epidemiology, Male, Middle Aged, Friedreich Ataxia epidemiology, Genetics, Population
Abstract

All the cases of Friedreich's ataxia (FA) diagnosed between 1945 through 1984 among residents of a defined area of northwestern Italy were ascertained (N = 59). Cases were diagnosed according to the criteria of the "Quebec Cooperative Study on Friedreich's Ataxia (QCSFA)" with minor modifications. We identified 39 families with 47 probands and 12 secondary cases. Therefore ascertainment probability was 80%. Male to female ratio was 1:1. Pedigrees were compatible with autosomal recessive inheritance. Segregation ratio was 0.28 with both Weinberg's method and the "singles" method (under incomplete ascertainment). Point prevalence ratio was 1.2/100,000 population. Birth incidence rate was 1/36,000 live births. Gene frequency was estimated to be 1/191. The ratio of first-cousin marriages observed among parents of FA patients (3%) was lower than expected from Dahlberg's formula (8%). This finding is not compatible with the hypothesis of genetic heterogeneity for FA.

Published
1990
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23. Motor neuron disease in the province of Turin, Italy, 1966-1980. Survival analysis in an unselected population.

Author

Mortara P, Chiò A, Rosso MG, Leone M, and Schiffer D

Subjects
Adult, Aged, Amyotrophic Lateral Sclerosis mortality, Bulbar Palsy, Progressive mortality, Female, Follow-Up Studies, Humans, Italy, Male, Middle Aged, Muscular Atrophy mortality, Motor Neurons, Neuromuscular Diseases mortality
Abstract

We performed a population based survival analysis of all incident cases (220) of motor neuron disease (MND) in the province of Turin, Italy, during the period 1966-1980. 175 cases were diagnosed as amyotrophic lateral sclerosis (ALS), 43 as progressive muscular atrophy (PMA) and 2 as progressive bulbar palsy (PBP). The life-tables of MND, adjusted as to the "expected" mortality, showed a survival rate of 27.8% and 22.0% at 5 and 10 years, respectively. The course of PMA and ALS cases was different, with a 5-year survival rate of 66.8% and 17.7%, respectively. Nevertheless both life-tables showed a similar pattern with a rapidly fatal outcome in the first 3 years after diagnosis and a slower death rate in the following years. In each curve, the slopes suggested the presence of 2 subgroups with different prognosis. It is to be stressed that a percentage of PMA patients (25.7%) showed a rapidly fatal outcome and that a subgroup of ALS patients (26.6%) showed a relatively benign course. This might suggest a different individual susceptibility to the disease.

Published
1984
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24. Disability and quality of life in hereditary ataxias: a self-administered postal questionnaire.

Author

D'Ambrosio R, Leone M, Rosso MG, Mittino D, and Brignolio F

Subjects
Activities of Daily Living, Adolescent, Adult, Child, Female, Friedreich Ataxia genetics, Friedreich Ataxia psychology, Gait, Humans, Italy, Male, Middle Aged, Postal Service, Prognosis, Self Disclosure, Social Support, Surveys and Questionnaires, Disabled Persons, Friedreich Ataxia physiopathology, Quality of Life
Abstract

A postal questionnaire was sent to 151 patients affected by Friedreich's disease (FD) and other hereditary ataxias (OHA) to study their disability and quality of life. A 79.5% response rate was obtained. A scoring system based on disability in walking, dressing, personal care, eating and speaking was developed and used. Walking was the most impaired activity. The degree of disability was similar between FD and OHA. Institutionalization, frequency of social contacts, work activity, recreational and social activities were influenced by disability.

Published
1987
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25. Epidemiology of motor neuron disease in two Italian provinces. Analysis of secular trend and geographic distribution.

Author

Chiò A, Brignolio F, Meineri P, Rosso MG, and Schiffer D

Subjects
Aged, Demography, Female, Humans, Italy, Male, Middle Aged, Space-Time Clustering, Motor Neurons, Neuromuscular Diseases epidemiology
Abstract

Incidence and prevalence rates of motor neuron disease in two Italian provinces (Asti and Cuneo, Piedmont region) in the period 1971 through 1985 were estimated. The data were omogeneous in the investigated area, but an increasing incidence of the disease during the period studied was found, particularly in older age groups and in females. An increasing trend in mean age of onset of symptoms was also found.

Published
1989
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