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7th CJD Family Conference

First Session Saturday - CJD 2009

Presentations:

  • Welcoming, N. Cashman
  • Introduction, P. Gambetti
  • Why may there be a delay in the diagnosis of sporadic CJD, RG. Will
  • Quantification of prions in peripheral organs and biological fluids, C.Soto
  • Diffusion MR Imaging is a very accurate test in the early diagnosis of Creutzfeldt-Jakob disease, A. Bizzi
  • Minimally invasive diagnostic testing in CJD: MRI and CSF, M. Geschwind
  • Current State and Future Challenges of Prion Diagnostics, J. Safar
  • TREATMENT OF HUMAN PRION DISEASE An Introduction & Overview, R. Knight
  • Doxycycline and CJD: the ongoing clinical trial, G. Forloni
  • Preliminary results of the First U.S. Treatment Trial for Sporadic Jakob-Creutzfeldt Disease (sCJD), M. Geschwind
  • The National Prion Disease Pathology Surveillance Center, P. Gambetti
  • Creutzfeldt-Jakob disease in Canada V11.0, G. Jansen
  • IN THE UK : THE NATIONAL CJD SURVEILLANCE UNIT & ITS WORK, R. Knight
  • CJD Surveillance in Mexico, V. Sanchez
  • Round table with the experts, N. Cashman, M. Geschwind, C. Soto, A. Bizzi, B. Will, J. Safar


Welcoming

Length: 8 min (Chaptered) - Presenter: N. Cashman

  • Welcoming
  • Scientists and Families togehter
  • Presentation of PrioNet Canada
  • PrioNet and collaborators
  • The agenda of the conference
  • ...

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Introduction

Length: 5 min - Presenter: P. Gambetti

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Why may there be a delay in the diagnosis of sporadic CJD?

Length: 21 min (Chaptered) - Presenter: RG. Will

  • Why may there be a delay in the diagnosis of sporadic CJD?
  • Deaths from sporadic CJD 1990 – 2008
  • Time to suspect sCJD for Cases and Non Cases in 1993/4 and 2003/4
  • Source of referrals f sporadic CJD
  • Diagnosis of degenerative neurological disorders
  • ...

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Quantification of prions in peripheral organs and biological fluids

Length: 25 min (Chaptered) - Presenter: C. Soto

  • Quantification of prions in peripheral organs and biological fluids
  • Importance of Prion Diagnosis - 1/2
  • Importance of Prion Diagnosis - 2/2
  • The problem of Prion Diagnosis
  • PrPSc amplification during disease propagation
  • ...

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Diffusion MR Imaging is a very accurate test in the early diagnosis of Creutzfeldt-Jakob disease

Length: 23 min (Chaptered) - Presenter: A. Bizzi

  • Diffusion MR Imaging is a very accurate test in the early diagnosis of Creutzfeldt-Jakob disease
  • Diagnostic Dilemmas
  • Outline
  • Creutzfeldt-Jacob Disease
  • sCJD and T2WI signal abnormalities
  • ...

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Minimally invasive diagnostic testing in CJD: MRI and CSF

Length: 21 min (Chaptered) - Presenter: M. Geschwind

  • Minimally invasive diagnostic testing in CJD: MRI and CSF
  • Actual Diagnoses of Potential CJD Referrals to UCSF (8/1/01 - 7/1/09)
  • What were diagnoses prior to correct CJD diagnosis?
  • Most Common Diagnoses Within Top Five Major Diagnostic Categories (N=373 diagnoses, 97 pts)
  • Top 10* Individual Misdiagnoses for sCJD
  • ...

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Current State and Future Challenges of Prion Diagnostics

Length: 19 min (Chaptered) - Presenter: J. Safar

  • Current State and Future Challenges of Prion Diagnostics
  • Acknowledgments
  • Critical areas of prion science
  • Reservoirs of scrapie and CWD in the context of vCJD, BSE, and new prion isolates
  • Current classification and differentiation of human prions
  • ...

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TREATMENT OF HUMAN PRION DISEASE An Introduction & Overview

Length: 18 min (Chaptered) - Presenter: R. Knight

  • TREATMENT OF HUMAN PRION DISEASE An Introduction & Overview
  • ORGANISATION F THE PRESENTATION
  • GENERAL INTRODUCTION
  • A MIXED AUDIENCE DIFFERENT BACKGROUNDS DIFFERENT PERSPECTIVES
  • ...

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Doxycycline and CJD: the ongoing clinical trial

Length: 20 min (Chaptered) - Presenter: G. Forloni

  • Doxycycline and CJD: the ongoing clinical trial
  • New drug therapy of amyloidoses : resorption of AL-type deposits with 4'-Iodo-4'-deoxydoxorubicin
  • Effectiveness of anthracycline against experimental prion disease in syrian hamsters
  • ...

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Preliminary results of the First U.S. Treatment Trial for Sporadic Jakob-Creutzfeldt Disease (sCJD)

Length: 22 min (Chaptered) - Presenter: M. Geschwind

  • Preliminary results of the First U.S. Treatment Trial for Sporadic Jakob-Creutzfeldt Disease (sCJD)
  • Actual Diagnoses of Potential CJD Referrals to UCSF (8/1/01 - 7/1/09)
  • Quinacrine & Chlorpromazine effective in vitro
  • Study Design: Randomized, double-blinded, placebo controlled (delayed start)
  • ...

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The National Prion Disease Pathology Surveillance Center

Length: 19 min (Chaptered) - Presenter: P. Gambetti

  • The National Prion Disease Pathology Surveillance Center
  • National Prion Disease Pathology Surveillance
  • Center Cases Examined1 (May 15, 2009)
  • Classification of Sporadic Prion Diseases Examined by the NPDPSC, Years 2000-2009 (July 9, 2009)
  • ...

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Creutzfeldt-Jakob disease in Canada V11.0

Length: 21 min (Chapetered) - Presenter: G. Jansen

  • Creutzfeldt-Jakob disease in Canada V11.0
  • Introduction
  • Break down of referred patients April 1, 1998-June 1, 2009
  • Graph Referrals by year
  • Suspected Referrals by Source
  • ...

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IN THE UK : THE NATIONAL CJD SURVEILLANCE UNIT & ITS WORK

Length: 18 min (Chaptered) - Presenter: R. Knight

  • IN THE UK : THE NATIONAL CJD SURVEILLANCE UNIT & ITS WORK
  • OUTLINE
  • WHO WE ARE & WHAT WE DO
  • UK CJD SURVEILLANCE & CLINICAL RESEARCH
  • SCRAPIE
  • ...

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CJD Surveillance in Mexico

Length: 18 min (Chaptered) - Presenter: V. Sanchez

  • CJD Surveillance in Mexico - 1/2
  • CJD Surveillance in Mexico - 2/2
  • PREVALENCE
  • PATIENT REFERRAL
  • DIAGNOSIS
  • ...

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Round table with the experts

Length: 19 min (Chaptered) - Participants: N. Cashman, M. Geschwind, C. Soto, A. Bizzi, B. Will, J. Safar

  • What are the differences between : FLAIR / ADC / DWI ?
  • How can prion be destroyed ?
  • How is prion transmitted to humans ?
  • Are there some tests in occulair tissues ?
  • Explain the relation between the medical staff dealing with patients ?
  • ...

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Second Session Sunday - CJD 2009

Presentations:

  • The Centers for Disease Control and Prevention Report: Prion Disease Activities at CDC, R. Maddox
  • CJD FOUNDATION SURVEILLANCE REPORT (Descriptive Analysis), S. Korzeniewski
  • The Risk of Transfusion Transmission of Classic Creutzfeldt-Jakob Disease (CJD) Is Lower than That for Variant CJD, if Not Zero, K. Dorsey
  • Comparison of prions associated with iatrogenic and sporadic CJD: An update, W.-Q. Zou
  • Pentosan sulphate: A friendly delivery system for therapy in prion diseases, M. Pocchiari
  • Fundación Mexicana para la CJD (Mexican CJD Foundation), V. Sanchez
  • The Italian Association on Prion Encephalopaties, R. Borgis
  • THE CJD SUPPORT NETWORK, R. Knight
  • CJD support group network, S. Solvyns


The Centers for Disease Control and Prevention Report: Prion Disease Activities at CDC

Length: 21 min (Chaptered) - Presenter: R. Maddox

  • The Centers for Disease Control and Prevention Report: Prion Disease Activities at CDC
  • Objective
  • Surveillance
  • What is surveillance?
  • Surveillance
  • ...

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CJD FOUNDATION SURVEILLANCE REPORT (Descriptive Analysis)

Length: 27 min (Chapetered) - Presenter: S. Korzeniewski

  • CJD FOUNDATION SURVEILLANCE REPORT (Descriptive Analysis)
  • OUTLINE
  • INTRODUCTION
  • CJDF Surveillance Efforts - 1/2
  • CJDF Surveillance Efforts - 2/2
  • ...

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The Risk of Transfusion Transmission of Classic Creutzfeldt-Jakob Disease (CJD) Is Lower than That for Variant CJD, if Not Zero

Length: 12 min (Chaptered) - Presenter: K. Dorsey

  • The Risk of Transfusion Transmission of Classic Creutzfeldt-Jakob Disease (CJD) Is Lower than That for Variant CJD, if Not Zero
  • History of the ARC CJD Lookback Study
  • Epidemiology
  • Methods - 1/2
  • ...

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Comparison of prions associated with iatrogenic and sporadic CJD: An update

Length: 14 min (Chaptered) - Presenter: W.-Q. Zou

  • Comparison of prions associated with iatrogenic and sporadic CJD: An update
  • Background
  • Aim
  • PrPSc typing by conventional method
  • Application of sophisticated methods
  • ...

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Pentosan sulphate: A friendly delivery system for therapy in prion diseases

Length: 16 min (Chaptered) - Presenter: M. Pocchiari

  • Pentosan sulphate: A friendly delivery system for therapy in prion diseases
  • Objective
  • PENTOSAN POLYSULPHATE SODIUM (PPS)
  • Pentosan polysulphate treatments in animal models of prion diseases
  • ...

Intraventricular PPS infusion (Doh-Ura et al., 2004)

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Fundación Mexicana para la CJD (Mexican CJD Foundation)

Length: 11 min (Chaptered) - Presenter: V. Sanchez

  • Fundación Mexicana para la CJD (Mexican CJD Foundation)
  • Patient referal
  • Boards of directors
  • Objectives
  • Short term goals
  • ...

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The Italian Association on Prion Encephalopaties

Length: 13 min (Chaptered) - Presenter: R. Borgis

  • The Italian Association on Prion Encephalopaties A.I.En.P. Onlus
  • Prion encephalopaties epidemiological data
  • General information about the epidemilogic data
  • Numbers through the years
  • Numbers through the italian areas
  • ...

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THE CJD SUPPORT NETWORK

Length: 12 min (Chaptered) - Presenter: R. Knight

  • THE CJD SUPPORT NETWORK
  • Intro - 1/3
  • Intro - 2/3
  • Intro - 3/3
  • Origins of the network
  • ...

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CJD support group network

Length: 16 min (Chaptered) - Presenter: S. Solvyns

  • CJD support group network
  • Our History
  • The Work of the CJD Support Group Network
  • Education and Awareness Program
  • So what does CJD being transmissible mean for families
  • ...

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