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Research networks in movement disorders

Research networks in movement disorders. Joaquim Ferreira, MD, PhD Instituto de Medicina Molecular Faculdade de Medicina de Lisboa. Clinical Research (experimental medicine). NIH Definition

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Research networks in movement disorders

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  1. Research networks in movement disorders Joaquim Ferreira, MD, PhD Instituto de Medicina Molecular Faculdade de Medicina de Lisboa

  2. Clinical Research(experimental medicine) • NIH Definition 1. patient-oriented research: research conducted with human subjects (or on material of human origin such as tissues, specimens and cognitive phenomena) for which an investigator directly interacts with human subjects. Includes: • (a) mechanisms of human disease • (b) therapeutic interventions • (c) clinical trials • (d) development of new technologies 2. epidemiologic and behavioral studies 3. outcomes and health services research • conducted physician-scientists • vs. basic/fundamental research • ≠ (but includes) pharmacological research or clinical trials

  3. Evolution in biomedical research manageability productivity “the whole animal” cells genes 1930 1940 1950 1960 1970 1980 1990 NIH NINDS Clinical Center for Medical Research Clinical research “crisis” David G. Nathan, JAMA 2008 Claude Lenfant, NEJM 2003

  4. Clinical research “crisis” NIH applications by degree 1995 David G. Nathan, JAMA 1998 Report of the ClinicalResearch Subcommittee of the Scientific Issues Committee of the AAN.Neurology, Apr 1995

  5. Clinical research in Europe: needsEuropean Society of Cardiology • Transnational research cooperation • Coordination of public and charitable funding for non-commercial clinical trials • Research focussing on rare diseases, orphan drugs and European-health needs • Pan-European clinical trials (large samples, easy recruitment, reliable estimates of effect, pragmatic) European Society of Cardiology, Lancet 2002

  6. Parkinson´s Disease

  7. Cochrane Collaboration

  8. Symptomatic treatment

  9. PD progression Dementia Disability Psychosis Instability & falls Motor complications & dyskinesias Bilateral Unilateral • 4–6 yrs Time Preclinical Prodromal Signs and symptoms Ferreira JJ

  10. Disease modifying

  11. Disease modifying

  12. Late stage

  13. Huntington’s Disease

  14. Huntington's disease • rare degenerative brain disorder • genetic cause identified in 1993 • 30,000 people effected in Europe • 150,000 at risk for inheriting the illness How many patients are needed for “neuroprotective trials”? Total functional capacity Marder K, Neurology 2000

  15. The European HD Network (EHDN) ru 18 Countries > 130 study sites

  16. REGISTRY

  17. Enrollment in REGISTRY 6133participants 14873visits

  18. REGISTRY-HD Portugal. 2009 REGISTRY-HD PARTICIPANTES de CENTROS PORTUGUESES (2006-2009) 116 85 50 25

  19. Research networks in movement disorders Joaquim Ferreira, MD, PhD Instituto de Medicina Molecular Faculdade de Medicina de Lisboa

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