evolution of orphanet · from a simple concept to a centre of reference for literature on rare...
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Evolution of Orphanetin Response to
an Evolution of NeedsSégolène AYMÉDirector of Orphanet
ORPHANET 10 years of services to rare diseases PARIS 15 February 2007
OrphanetInfobiogenFirst Search Engine
First Network
Orphan Drug Mission France
Human Genome Project
AFM Telethon for Rare Diseases
Orphanet
Three Converging Developments
Personal Interest of Ségolène Aymé
Creation of SC-11
PossumGendiagon
Minitel
199219871984
Orphanet
19971978
Gendiag
1990
Link with INSERM
1995
Working Group
19971995199019871983
Orphan Drug Act
Development of a Policy
1997
Development of the Internet19941974 1990
ORPHANET 10 years of services to rare diseases PARIS 15 February 2007
From a Simple Concept to a Centre of Reference for Literature on Rare Diseases
Directory of Resources in Europe
Encyclopaedia
On 2000 diseasesIn 6 languagesWritten by European expertsAn international editorial committeePartnerships with journalsA free-access electronic journal OJRD
Consultations with specialistsClinical laboratoriesClinical trialsResearch in progressRegistersPatient organisationsProfessionals
ORPHANET 10 years of services to rare diseases PARIS 15 February 2007
Many Partnershipsin France and in the World
ORPHANET 10 years of services to rare diseases PARIS 15 February 2007
An Elaborate OrganisationIn Partnering
Countries
Collection of dataValidation by a scientific advisory committee
In Paris
Coordination List of diseasesEncyclopaediaData server
ORPHANET 10 years of services to rare diseases PARIS 15 February 2007
Database of Patient Support Groups and Consultations…
1998-2006
ORPHANET 10 years of services to rare diseases PARIS 15 February 2007
Database of Laboratories…1998-2006
ORPHANET 10 years of services to rare diseases PARIS 15 February 2007
Encyclopaedia in 6 languages
1998-2006
ORPHANET 10 years of services to rare diseases PARIS 15 February 2007
Continuous Development of New Services
2002 Website development tool for patient organisations
2002 Service to bring patients together
2003 OrphaNews France
2004 Service to sign patients up for clinical trials
2004 “Web kits” for patient organisations
2004 OrphanXchange
2005 OrphaNews Europe
2006 OrphaSchool
ORPHANET 10 years of services to rare diseases PARIS 15 February 2007
A Grand Data Processing ProjectLarge Volume of Activity
Migration towards a new server to separate development and production
25 elaborate databases20 000 connections / day800 daily updates20 applications in production / 5 new per year
With the support of DSI of INSERM starting January 2007Mutualisation of means and competencies
ORPHANET 10 years of services to rare diseases PARIS 15 February 2007
From Basic Graphics…
ORPHANET 10 years of services to rare diseases PARIS 15 February 2007
To a Sophisticated Website
v4
ORPHANET 10 years of services to rare diseases PARIS 15 February 2007
Our Directories
ORPHANET 10 years of services to rare diseases PARIS 15 February 2007
Development of a Brand Name
OrphaSchool2006
OrphaNews France2003
OrphanXchange2004
Encyclopaedia for the General Public
2006OrphaNews Europe
2005
Orphanet Report Series2005
ORPHANET 10 years of services to rare diseases PARIS 15 February 2007
First International Websiteon Rare Diseases
User Statistics from 1998-2006
0
50000
100000
150000
200000
250000
300000
1998 1999 2000 2001 2002 2003 2004 2005 2006
num
ber o
f use
rs p
er IP
add
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ORPHANET 10 years of services to rare diseases PARIS 15 February 2007
Public Health Tool20 000 daily users from
150 countries
Website Users
Teachers and students10.8%
Other health professionals8.3%
Communication professionals
1.6%
Paramédicaux4.6%
Pharmacists1.3%
Biologists2.5%
Private practitioners 8.1%
Patients, friends, and families
29.8%
Other users8.8%
Rare disease experts 4.4%
Hospital physicians 19.8%
ORPHANET 10 years of services to rare diseases PARIS 15 February 2007
Satisfaction of Orphanet Users
LanguageTotal Satisfaction
Portuguese Spanish Italian German English French All
92% 97% 97% 96% 96% 99% 96%
Website Visitors
More than two times per year
17.8%More than two
times per month 22.7%
More than two times per week
10.2%
First visit 49.3%
Referal to the Orphanet Website
Search engine (Google) 51.6%
Physician 7.6%
Collegue 6.6% Hosptial site
5.2%
Orphanet Directory Book 4.7%
Patient Group2.2%
Other 22.1%
ORPHANET 10 years of services to rare diseases PARIS 15 February 2007
Total Budget of 1.3 million €
French Ministry of Health 27%
INSERM 28%
European BioEnterprises 2%
FondationGroupama 3%
Association Française Contre les Myopathies 6%
Les Entreprise du Médicament 7%
DG Research 10%
DG SANCO 17%
ORPHANET 10 years of services to rare diseases PARIS 15 February 2007
Evolution Orphanet Team France 1997-2007
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1997 1998 1999 2000 2001 2002 2003 2004 2005 2006 2007
num
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f em
ploy
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administration documentation information technology
ORPHANET 10 years of services to rare diseases PARIS 15 February 2007
Hôpital Broussais Paris
Member of the Rare Disease Platform (Broussais Hospital in Paris)
Alliance Maladies Rares
Eurordis
GIS Maladies RaresOrphanet
Maladies Rares Info Services
ORPHANET 10 years of services to rare diseases PARIS 15 February 2007
Source for French Institutions of Health
INVSÉpidémiologie
Priorisation
Centres de référence
Diffusion de leurs documents
DIMDocumentation
INSERMMeSH
LEEMMédicaments Orphelins
DGSCartes de soinsFiches urgences
DHOSCentres de référence
HASGuides patients
ORPHANET 10 years of services to rare diseases PARIS 15 February 2007
International Partner
EMEAOrphan Drugs
Database
OMSRevision of ICD-10
EPPOSIPartnering workshops
ESFConferenceDG
RECHERCHEDefinition of FP7
Conference Organisation
HIGH LEVEL GROUPReport on European Centres of Reference
DG SANCORare Disease Task Force Secretariat
OCDEGenetic Testing
ORPHANET 10 years of services to rare diseases PARIS 15 February 2007
Future Projects
Develop a new version of the website• More user-friendly• Accessible to handicapped people• With many new applications
Stabilise the project financially and administrativelyContinue to evolve according to the needs present and technologies available
ORPHANET 10 years of services to rare diseases PARIS 15 February 2007
Thank you for your attention
ORPHANET 10 years of services to rare diseases PARIS 15 February 2007