Evolution of Orphanet · From a Simple Concept to a Centre of Reference for Literature on Rare...

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

ress

per

mon

th

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

52

17

2

2

6

1997 1998 1999 2000 2001 2002 2003 2004 2005 2006 2007

num

ber o

f em

ploy

ees

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