2015, Number 1
<< Back Next >>
MEDICC Review 2015; 17 (1)
Global comparisons for developing a national dementia registry in Cuba
González CJA
Language: English
References: 31
Page: 59-63
PDF size: 79.69 Kb.
ABSTRACT
A review/analysis of current literature on exemplary multicenter registries of clinical dementias was conducted as a comparative basis for a proposed Cuban registry on cognitive impairment and dementia.
The study of mental health disorders has been predominantly based on clinical concepts and criteria, and only in recent years a public health approach has been applied. Traditional epidemiological studies do not reveal patterns of cognitive impairment and behavioral disorders (particularly dementias) in routine clinical practice in a defined geographic area, which would provide essential information for long-term planning and allocation of health and social resources. Thus, multicenter clinical registries have become an important source of clinical and epidemiological data on dementias in recent decades. This article addresses the Cuban proposal for an automated national dementia registry, comparing it to others internationally. The registry would be housed in the Neurology and Neurosurgery Institute, and would include a duly protected surveillance network hosted on the Institute's website.
Such a multicenter dementia registry based on epidemiological surveillance methods and limited to a defined area would provide new, valid, representative and current data on dementia occurrence patterns by subtype, flow of case identification and referral from primary care, as well as the main clinical features of patients at the time of their first contact with health services. This information would support development of health planning policies for implementation of programs aimed at improved distribution of social and health resources in the affected population, monitoring of the disorder's natural evolution and identification of preventive measures. The scientific benefits would be equally important: production of new knowledge, generation of hypotheses for clinical research projects, standardization of diagnostic criteria, and promotion of multicenter research in both national and multinational centers.
REFERENCES
World Health Organization [Internet]. Dementia: a Public Health Priority. Geneva: World Health Organization; 2012 [cited 2012 Apr 13]. 112 p. Available from: http://www.who.int/mental _health/publications/dementia_report_2012/en/
Prince M, Bryce R, Albanese E, Wimo A, Ribeiro W, Ferri CP. The global prevalence of dementia: A systematic review and metaanalysis. Alzheimers Dement. 2013 Jan;9(1):63–75.
Prince M. Epidemiology of dementia. Psychiatry. 2007;6(12):488–90.
Ministry of Public Health (CU). Proyecciones de la Salud Pública en Cuba para el 2015 [Internet]. Havana: Ministry of Public Health (CU); 2006 Feb [cited 2012 Apr 13]. 68 p. Available from: http://www.nationalplanningcycles.org/sites/ default/files/country_docs/Cuba/cuba_proye cciones_de_la_salud_publica_para_el_2006 -2015.pdf. Spanish.
National Health Statistics and Medical Records Division (CU) Anuario Estadístico de Salud 2011 [Internet]. Havana: Ministry of Public Health (CU); 2012 Apr [cited 2012 Apr 13]. 233 p. Available from: http://fi les.sld.cu/dne/fi les/2012/04/ anuario-2011-e.pdf. Spanish.
Grupo de Investigación en Demencias 10/66 “GID 10/66” [Internet]. Havana: Ministry of Public Health (CU); 1999 [updated 2009; cited 2012 Apr 13]. Available from: http://www.alzheimer.sld.cu/ grupo-de-investigacion-1066. Spanish.
Llibre JJ, Ferri CP, Acosta D, Guerra M, Huang Y, Jacob KS. Prevalence of dementia in Latin America, India, and China: a population-based cross-sectional survey. Lancet [Internet]. 2008 Aug 9 [cited 2012 Apr 13];372(9637):464–74. Available from: http://www.thelancet.com/search/results?se archTerm=Prevalence+of+dementia+in+Latin+Am erica%2C+India%2C+and+China%3A+a+populat ion-based+cross-sectional+survey&fi eldName=Ar ticleTitle&journalFromWhichSearchStarted=lancet
Martínez C, Pérez VT, Carballo M, Varona G. Estudio clínico epidemiológico del síndrome demencial. Rev Cubana Med Gen Integr [Internet]. 2005 May–Aug [cited 2013 Sep 11];21(3–4). Available from: http://scielo.sld .cu/scielo.php?script=sci_arttext&pid=S0864 -21252005000300013&lng=es. Spanish.
Sotolongo O, Rodríguez L. Prevalencia del síndrome demencial y la enfermedad de Alzheimer en pacientes del policlínico “Pedro Fonseca”. Rev Cubana Med Gen Integr. 2012;28(4):694– 702. Spanish.
Psichatria.com [Internet]. Madrid: Spanish Psychiatry Society; c2014. Medina Alvarez P. Prevalencia de la Enfermedad de Alzheimer en la población mayor de 65 años. Policlínico 28 de Enero. Municipio Playa; 2006 [cited 2012 Apr 13]. Available from: http://www.psiquiatria.com/ imprimir.ats?24727. Spanish.
Fariñas AT, Sierra RM. Metodología para el diseño de sistemas de vigilancia. Reporte Técnico de Vigilancia [Internet]. 2006 [cited 2012 Apr 13];11(6). Available from: http://www.sld.cu/galerias/pdf/sitios/vigilancia/farinas .pdf. Spanish.
Garre-Olmo J, Flaque M, Gich J, Pulido TO, Turbau J, Vallmajo N, et al. A clinical registry of dementia based on the principle of epidemiological surveillance. BMC Neurol. 2009 Jan 28;9:5.
Fillenbaum GG, Beekly D, Edland SD, Hughes JP, Heyman A, van Belle G. Consortium to Establish a Registry for Alzheimer’s Disease (CERAD): development, data base structure, and selected fi ndings. Top Health Inf Manage. 1997 Aug;18(1):47–58.
Larson EB, Kukull WA, Teri L, McCormick W, Pfanschmidt M, van Belle G, et al. University of Washington Alzheimer’s Disease Patient Registry (ADPR): 1987–1988. Aging (Milano). 1990 Dec;2(4):404–8.
New York State Dementias Registry [Internet]. New York: New York State Department of Health; c2013 [cited 2012 Apr 13]. Available from: http:// www.health.state.ny.us/diseases/conditions/ dementia/alzheimer/dementia_registry_fact _sheet.htm
Offi ce for the Study of Aging (US) [Internet]. South Carolina: USC Arnold School of Public Health (US); c1988. Alzheimer’s Disease Registry South Carolina: University of South Carolina (US); 2012 [cited 2012 Apr 13]. Available from: http://www .sph.sc.edu/osa/alzheimers_registry.html
López-Pousa S, Garre-Olmo J, Monserrat-Vila S, Boada-Rovira M, Tárraga-Mestre L, Aguilar- Barberà M, et al. Propuesta para un registro clínico de demencias. Rev Neurol. 2006 Jul 1–15;43(1):32–8. Spanish.
Melcona CM, Bartoloni L, Katz M, Del Mónaco R, Mangone CA, Melcon MO, et al. Propuesta de un Registro centralizado de casos con Deterioro Cognitivo en Argentina (ReDeCAr) basado en el Sistema Nacional de Vigilancia Epidemiológica. Neurol Arg. 2010 Jul–Sep;2(3):161–6. Spanish.
González JA. Propuesta de un Registro Nacional Automatizado de Demencias en Cuba. Rev Cubana Salud Pública [Internet]. 2013 Apr–Jun [cited 2013 Sep 11];39(2):354–72. Available from: http://scielo.sld.cu/scielo .php?script=sci_arttext&pid=S0864-346620 13000200015&lng=es. Spanish.
Goldberg J, Gelfand HM, Levy PS. Registry evaluation methods: a review and case study. Epidemiol Rev. 1980;2:210–20.
Gliklich RE, Dreyer NA, editors. Registries for Evaluating Patient Outcomes: A User’s Guide. 2nd ed. (Prepared by Outcome DEcIDE Center [Outcome Sciences, Inc. d/b/a Outcome] under Contract No. HHSA29020050035I TO3.) AHRQ Publication No.10-EHC049. Rockville (US): Agency for Healthcare Research and Quality; 2010 Sep.
Cooper B, Holmes C. The Camberwell Dementia Case Register: a valuable research tool. IPA Bulletin. 1997;14:23–4.
Roos LL, Nicol JP. A research registry: uses, development, and accuracy. J Clin Epidemiol. 1999 Jan;52(1):39–47.
Scottish Dementia Research Interest Register [Internet]. Perth (GB): Scottish Dementia Research Interest Register (GB); c2010 [cited 2012 Apr 13]. Available from: http://www.sdcrn .org.uk
Swedish Dementia Registry, SveDem [Internet]. Stockholm: Swedish Association of Local Authorities and Regions; Swedish Brain Power Network; c2014 [cited 2012 Apr 13]. Available from: http://www.ucr.uu.se/svedem/index.php/ about-svedem
University of Washington Alzheimer’s Disease Patient Registry (ADPR) [Internet]. Washington, DC: University of Washington; c2014 [cited 2012 Apr 13]. Available from: http://depts.washington .edu/gim/research/research_adpr.htm
University of Pittsburgh Alzheimer’s Disease Research Center [Internet]. Pittsburgh: University of Pittsburgh; c2014 [cited 2012 Apr 13]. Available from: http://www.adrc.pitt.edu/clinical core.asp
West Virginia Alzheimer’s Disease Registry [Internet]. West Virginia: West Virginia University; c2014 [cited 2012 Apr 13]. Available from: http:// www.wvadr.hsc.wvu.edu/
Calvó-Perxas L, Osuna MT, Gich J, Eligio- Hernández E, Linares M, Viñas M, et al. Características clínicas y demográfi cas de los casos de demencia diagnosticados en la Región Sanitaria de Girona durante el período 2007–2010: datos del Registro de Demencias de Girona (ReDeGi). Rev Neurol. 2012 Apr 1;54(7):399–406. Spanish.
Garre-Olmo J, López-Pousa S, Monserrat-Vila S, Pericot-Nierga I, Turon-Estrada A, Lax-Pericall C. [The feasibility of a registry of dementias: clinical features and diagnostic coverage]. Rev Neurol. 2007 Apr 1–15;44(7):385–91. Spanish.
Iliffe S, Curry L, Kharicha K, Rait G, Wilcock J, Lowery D, et al. Developing a Dementia Research Registry: a descriptive case study from North Thames DeNDRoN and the EVIDEM programme. BMC Med Res Methodol. 2011 Jan 27;11(1):9.