25/09/2014. The French National Alzheimer Data bank Base Nationale Alzheimer. September 23, Start Nov 2009
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1 The French National Alzheimer Data bank Base Nationale Alzheimer Centre Edmond et Lily Safra Start Nov 2009 The Na3onal Alzheimer data Bank (BNA) aims to collect data from all memory centers throughout the country. Each par3cipa3ng center is required to transmit informa3on to the BNA involving a computer file containing 31 variables corresponding to a limited data set. targets: Public health data for ministers & regional administra0ons Epidemiological Research September 23, centers 401 Memory Centers (CM) 28 Research Memory Centers(CMRR) 69 private specialists pa0ents consulta0ons History Organisation & content of the BNA BNA data Discussion 1
2 2002 2
3 History Organisation & content of the BNA BNA data Discussion Centre Edmond et Lily Safra Sécurité environnement BNA 9 3
4 Users DGOS - informa3on - sotwares; Calliope, Rapid, Onyx, 4D Nord, Alpha. BNA CHU - Nice Output (DGOS ARS) Epidemiological analysis CHU - NICE InVS CHU - Nice French Na0onal Alzheimer Informa0on System CMRR = Centre Mémoire de Ressources et de Recherche Memory Resource and Research Centres CM = Consulta0on Mémoire Memory units SL = spécialiste libéral Independent specialist (neurologists, geriatricians, psychiatrists) BNA = Base Na0onale Alzheimer French Na0onal Alzheimer databank Na0onal Alzheimer Data Bank CIMA = Corpus Informa0on Minimal Alzheimer the Alzheimer limited data set 4
5 Pa0ent data Sex Date of first consulta3on Referred by Lifestyle Geographical loca3on Educa3onal level APA ALD Pa3ent protec3on measure Diagnosis Procedure / consulta0on data Date Type MMSE <pharmacological treatment Psychosocial interven3on 5
6 Each 0me I (or one of the group) meet Mr Dupont (in consulta0on, tes0ng, group..) I have access to the data of my center CIMA n xyz007 CIMA n xyz001 CIMA n xyz002 CIMA n xyz003 CIMA n xyz004 BNA CIMA n xyz005 CIMA n xyz006 CIMA n xyz007 CIMA n aze001 Ministry, regional administra0on, epidemiologist.may have access only to the anonymized CIMA I have access to the data of my center 6
7 Center Annual report History Organisation & content of the BNA BNA data Discussion Centre Edmond et Lily Safra Public Health data for Ministers & Regional Administra0ons 7
8 Public Health data for Ministers & Regional Administra0ons New pa0ents/ by diagnosis First 0me in consulta0on for memory problems WD: Wai3ng diagnosis Mem C: memory complaint Asso D: associated disorders Dep & Psy D: Depression & psychiatric diseases Other N D : Other neurological disease New pa0ents/ by diagnosis First 0me in consulta0on for memory problems WD: Wai3ng diagnosis Mem C: memory complaint Asso D: associated disorders Dep & Psy D: Depression & psychiatric diseases Other N D : Other neurological disease 8
9 ACHEI Acetylcholinesterase Inhibitor Period: Meman8ne Period: An8depressant Period: Period:
10 The Mini Mental State Examination at the Time of Alzheimer's Disease and Related Disorders Diagnosis, According to Age, Education, Gender and Place of Residence: A Cross-Sectional Study among the French National Alzheimer Database. Pradier C et al. PLoS One Aug 5;9(8):e The French National Alzheimer Database: A Fast Growing Database for Researchers and Clinicians. Anthony S et al. Dement Geriatr Cogn Disord Jul 2;38(5-6): Mild cognitive impairment and anti-alzheimer disease medications: A cross sectional study of the French National Alzheimer Databank (BNA). Tifratene K et al. J Alzheimers Dis. 2014;38(3): Use of drug treatments for Alzheimer's disease in France: a study on a national level based on the National Alzheimer's Data Bank (Banque Nationale Alzheimer). Tifratene K et al. Pharmacoepidemiol Drug Saf Sep;21(9): The French Alzheimer plan: description of the national Alzheimer information system. Le Duff F et al. J Alzheimers Dis. 2012;29(4): History Organisation & content of the BNA BNA data first glance Discussion Centre Edmond et Lily Safra 10
11 Things not to do Danger if the registry is not managed with epidemiologists Single sotware vs mul3ple sotwares Real informa3c use is needed Things to do 11
12 12
13 DGOS: Cécile Ballandier Plan Alzheimer: J Menard / B Lavallard CHU Nice DSP: Chirstian Pradier / K Tifratene / R Chevrier Centre Edmond et Lily Safra 13
14 Centre Edmond et Lily Safra 14
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