The Queen Sofía Foundation s Alzheimer s Disease Project
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1 The Queen Sofía Foundation s Alzheimer s Disease Project
2 Alzheimer s Disease Research Unit CIEN Foundation Queen Sofía Foundation Dr. P. Martínez Martín Scientific Director Alzheimer s Disease Research Unit CIEN Foundation Queen Sofía Foundation
3 Launch Presentation of the Project December 2002, El Pardo Palace H.M. King Juan Carlos and H.M. Queen Sofía Minister of Health & Consumer Affairs Minister of Labour & Social Affairs Madrid Regional Authority Madrid City Council Board of Governors of the Queen Sofía Foundation Political Representatives Relevant representatives of society Patient Associations Scientific Bodies Start of preparatory activities - January 2003 Foundation stone laid 4 October 2004
4
5 Guiding principle A socio-healthcare approach that seeks to address the consequences of Alzheimer s Disease for sufferers and their family circle and for society as a whole. The basis of the above principle is the need to fight the disease from a multidisciplinary stance, envisaging all the factors that influence it, while choosing to provide overall solutions to the problem.
6 Approach 1 - Identification of the problem posed by Alzheimer s Disease to sufferers, their family and friends, and society as a whole 2 - H.M. Queen Sofía s keen sensitivity to this problem 3 - Decision of the Queen Sofía Foundation, presided over by Her Majesty, to address the needs of the present situation 4 - Convergence of the desires and interests of all parties involved, i.e., Central, Regional and Local Government as well as society as a whole
7 Implementation of the Project Site Zone designated for town planning in the district known as the Vallecas extension, Madrid Composition and layout Long-term inpatient care facility Day-care centre Training and education facility Research unit
8
9 Addressees Ministry of ofhealth & C.A. C.A. Carlos Carlos III III Institute of ofhealth Queen Sofía Foundation Queen Sofía Foundation Community of ofmadrid Council Councilof offamily & Social Social Affairs Affairs
10 Addressees Research Ministry of ofhealth & C.A. C.A. Carlos Carlos III III Institute of ofhealth Queen Sofía Foundation Queen Sofía Foundation Community of ofmadrid Council Councilof offamily & Social Social Affairs Affairs Assistance and Education
11 Alzheimer s Disease Research Unit CIEN Foundation - Queen Sofía Foundation
12 ISCIII Advisers for the Research Unit design Prof. J. Ávila Severo Ochoa Molecular Biology Centre. CSIC - AUM Prof. F. Bermejo Pareja 12 de Octubre Hospital Dr. M. Calero Lara National Microbiology Centre, ISCIII Dr. A. Rábano H. Alcorcón Foundation and Brain Bank Dr. J. de Pedro Cuesta National Centre for Epidemiology, ISCIII Dr. J. Álvarez Linera - Rúber International Hospital, Madrid Prof. A. Calcedo Barba - Gregorio Marañón Hospital, Complutense University Dr. T. del Ser Quijano Severo Ochoa Hospital Neuropharma Dr. D. Muñoz García Madrid Brain Bank Toronto, Canada D. Manuel Nevado Rey - Head of Training. AFAL Alzheimer s Association
13 Research Unit - Definition
14 Research Unit Queen Sofía Foundation Queen Sofía Foundation Ministry of ofhealth & C.A. C.A. Carlos Carlos III III Institute of ofhealth CIEN CIEN Foundation Administrative Management CIBER CIBER for for Neurodegenerative diseases Scientific Activity
15 Functions Promoting, implementing and following up research projects Reference centre for research into Alzheimer s Disease & R.D. Stimulating the generation of hypotheses Identifying new or neglected areas of interest Furnishing knowledge to the interface with other processes Promoting research by training researchers Disseminating results and spreading knowledge Co-ordination with other centres at home and abroad Setting-up co-operation agreements with other institutions
16 Alzheimer s Disease Research Unit CIEN Foundation - Queen Sofía Foundation MANAGEMENT AND ADMINISTRATIVE ORGANS Executive Board Scientific Director General Manager Scientific Committee Research Ethics Committee
17 Alzheimer s Disease Research Unit CIEN Foundation - Queen Sofía Foundation MANAGEMENT AND ADMINISTRATIVE ORGANS Executive Board Director General of the Carlos III Institute Scientific Director of the CIEN Foundation Scientific Director of the AD Research Unit Representative of the Queen Sofía Foundation General Manager of the CIEN Foundation
18 Alzheimer s Disease Research Unit CIEN Foundation - Queen Sofía Foundation MANAGEMENT AND ADMINISTRATIVE ORGANS Executive Board Scientific Director Appointed by the Board of Governors of the CIEN Foundation
19 Alzheimer s Disease Research Unit CIEN Foundation - Queen Sofía Foundation MANAGEMENT AND ADMINISTRATIVE ORGANS Executive Board Scientific Director General Manager General Manager of the CIEN Foundation
20 Alzheimer s Disease Research Unit CIEN Foundation - Queen Sofía Foundation MANAGEMENT AND ADMINISTRATIVE ORGANS Executive Board Scientific Director General Manager Scientific Committee Scientific Director of the AD Research Unit 1 scientist appointed by the: Queen Sofía Foundation Carlos III Institute of Public Health AD Research Unit researchers CIEN Foundation NHS Interterritorial Council Self-help Associations
21 Alzheimer s Disease Research Unit CIEN Foundation - Queen Sofía Foundation MANAGEMENT AND ADMINISTRATIVE ORGANS Executive Board Scientific Director General Manager Scientific Committee Research Ethics Committee Scientific Director of the AD Research Unit 1 Clinical pharmacologist 2 Researchers 2 Experts in bioethics 1 Member of the healthcare staff 1 Representative of the Associations
22 Alzheimer s Disease Research Unit CIEN Foundation - Queen Sofía Foundation Research programmes Focused on dementia (preference: Alzheimer s Disease) Based on priorities set by the Scientific Committee In force for 5-year periods Short-, medium-and long-term activities Flexible and open to innovation
23 Alzheimer s Disease Research Unit CIEN Foundation - Queen Sofía Foundation High-priority research lines Early diagnosis of AD MRI, Biomarkers Molecular and cell biology in AD β-amyloid peptide, tau Ageing and risk factors for AD Traslational research in AD Assignment of resources and quality of care for AD patients First call for project application December 2006
24 Alzheimer s Disease Research Unit CIEN Foundation - Queen Sofía Foundation Basic areas Clinical research - Neurology Psychiatry Neuropsychology Geriatrics Epidemiology Socio-healthcare research Neurobiology Neurophysiology Neuroimaging Neuropathology
25 Equipment and resources Clinical research Examination rooms Gait/ Mov. Disord. research facility * Concealed observation room Epidemiology Telephone-survey room Socio-healthcare research Videoconference and interview room Neurobiology Cell biology laboratory, Cell culture Neurophysiology Video-EEG room * Neuroimaging MRI 3.0 T Neuropathology Autopsy, brain dissection and storage rooms Biologic samples Processing and storage Connected to CIBER biobanks * Only when active research projects in these areas exist
26 Multidisciplinary Clinical Unit Shared with the Madrid Regional Authority Basic co-ordinated multidisciplinary research team Neurologist + Psychiatrist + Neuropsychologist + Geriatrician + Physiotherapist + Sociologist Goal Information from patients at the facility Demographic and historical data Clinical status at admission Comorbidity Neuropsychological status Added impairments Characterisation of complications Prognostic factors Disability: determinants, measures Palliative care Death-related aspects Caregivers and environment Socio-healthcare and econometric data
27 Main research platforms Neuroimage Neuropathology Cell biology Clinical database Scientific e-library
28 Multidisciplinary support unit Agreements in course with other institutions Mount Sinai School of Medicine, NY, USA University of Washington & VA Puget Sound HCS, Seattle, WA, USA University of Milan and University of Catania, Italy Institution Federative de Recherche en Neurosciences, INSERM, France Institute for Neurociences of Castilla and León, Salamanca, Spain Centre for Research in Alzheimer Disease, Murcia, Spain Hospital Ruber Internacional, Madrid, Spain Matia Foundation, San Sebastián, Spain ASGER, Barcelona, Spain Institute for Economy and Geography, CSIC, Madrid, Spain
29 Alzheimer s Disease Research Unit CIEN Foundation - Queen Sofía Foundation Other projected activities Training aids in Alzheimer s Disease and Dementia research Annual Symposium on advances in Alzheimer s Disease and Dementia Queen Sofía International Alzheimer s Disease Conference Brainstorming meetings Seminar: From research to practice (practical applications) Meet the researchers (general public) Seminar: Research on dementia and society (mass media) Queen Sofía Foundation Alzheimer s Disease Research Prize Publications targeted at the public and professionals Alzheimer s Disease Research Unit website with news and information
30 Alzheimer s Disease Research Unit CIEN Foundation - Queen Sofía Foundation
31 OFFICIAL OPENING CEREMONY 21 September 2006
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