Psonet

Which countries are involved?

The initial proposal has been shared with people who are running registers of systemic treatment for psoriasis in different countries in Europe. A preliminary agreement to combine data was obtained from the following countries:

Click on the map to get more information on nation based registers

Europe Italy France Spain Switzerland Israel UK Sweden Germany The Netherlands Portugal Denmark Australia Czech Republic Slovenia Austria

Italy

Registry already established?

Psocare

Coverage of the registry Nationwide
Systemic treatment considered Biologicals and Conventional treatments including PUVA

Modality of data collection

Electronic form

Support

Governmental grant

Contact persons Luigi Naldi - Mauro Picardo
Date of start of the registry 2005
Number of patients recruited by end of June 2009 16628
Number of patients on biologicals 7677
Expected registry duration  
General comment on the organization and any difficulties met in establishing the register  

France

Registry already established?

Should be active in 2010
Coverage of the registry Nationwide
Systemic treatment considered Yes

Modality of data collection

e-CRF
Support

Clinical research devoted resources

Contact persons Olivier Chosidow
Date of start of the registry 2010
Number of patients recruited by end of June 2009  
Number of patients on biologicals  
Expected registry duration  
General comment on the organization and any difficulties met in establishing the register  

Spain

Registry already established?

Yes
Coverage of the registry National. Dermatology departments of 15 Centres
Systemic treatment considered Biologics and other systemic treatments

Modality of data collection

Electronic form

Support

Governmental grant

Academia Espa ola de Dermatologia y Venereologia

Pharmaceutical companies sponsorship

Contact persons Ignacio Garcia Doval
Date of start of the registry October 2008
Number of patients recruited by end of June 2009 553
Number of patients on biologicals 371
Expected registry duration 5 years
General comment on the organization and any difficulties met in establishing the register  

Switzerland

Registry already established?

 
Coverage of the registry  
Systemic treatment considered  

Modality of data collection

 

Support

 

Contact persons  Vahid Djamei
Date of start of the registry  
Number of patients recruited by end of June 2009  
Number of patients on biologicals  
Expected registry duration  
General comment on the organization and any difficulties met in establishing the register  

Israel

Registry already established?

Core registry established
Coverage of the registry 54% of the population (Clalit Health Services - the largest managed care organization in Israel)
Systemic treatment considered Biologic drug, systemic drug, phototherapy

Modality of data collection

Utilization of the Clalit Health Services database

Support

None

Contact persons Arnon Cohen
Date of start of the registry  
Number of patients recruited by end of June 2009  
Number of patients on biologicals  
Expected registry duration  
General comment on the organization and any difficulties met in establishing the register  

UK

Registry already established?

Yes
Coverage of the registry Nationwide
Systemic treatment considered Biologicals and Conventional treatments including PUVA

Modality of data collection

Electronic form

Support

Via professional body BAD Pharmaceutical companies sponsorship

Contact persons Anthony D. Ormerod
Date of start of the registry  
Number of patients recruited by end of June 2009  
Number of patients on biologicals  
Expected registry duration  
General comment on the organization and any difficulties met in establishing the register  

Sweden

Registry already established?

Yes
Coverage of the registry Nationwide
Systemic treatment considered Biological and non-biological (incl. PUVA)

Modality of data collection

Web-based electronic form - www.psoreg.org

Support

Governmental grant & pharmaceutical companies

Contact persons Marcus Schmitt-Egenolf www.derma.org
Date of start of the registry May 2007
Number of patients recruited by end of June 2009 1600
Number of patients on biologicals 30%
Expected registry duration Ongoing
General comment on the organization and any difficulties met in establishing the register See contact person

Germany

Registry already established?

PsoBest
Coverage of the registry Nationwide 2-stage cluster sampling of patients involving 49 dermatological clinics and 470 dermatology offices to date
Systemic treatment considered All biologic and conventional systemic antipsoriatric authorised in Germany

Modality of data collection

CRF (paper-based) and Online (web-based)

Support

Grants from the German Society of Dermatology, the German Board of Dermatologists and pharmaceutical companies

Contact persons Prof. Dr. Matthias Augustin
Date of start of the registry 1.1.2008
Number of patients recruited by end of June 2009 766
Number of patients on biologicals 320
Expected registry duration 8 years
General comment on the organization and any difficulties met in establishing the register

Considerable organisational and resource intensive efforts for centre activation, participation maintenance and for achieving completeness of required information.

Due to patient- and dermatologist-oriented and time-saving procedures, PsoBest is well accepted by all stakeholder parties involved.

The Netherlands

Registry already established?

Yes, locally
Coverage of the registry Local tertiary referral center
Systemic treatment considered All biologics

Modality of data collection

Electronic form, non web-based

Support

None

Contact persons L.L.Lecluse, Ph.I.Spuls
Date of start of the registry 1.1.2005
Number of patients recruited by end of June 2009 150 separate patients, 180 biologic episodes started
Number of patients on biologicals 150
Expected registry duration No end-date
General comment on the organization and any difficulties met in establishing the register A comparable local register in another tertiary referral center is available. Cooperation with this register has led to combined  analysis. This cooperation will be extended in the near future and other centers will join.

Portugal

Registry already established?

Work in progress
Coverage of the registry  
Systemic treatment considered  

Modality of data collection

 

Support

 

Contact persons Américo Figueiredo
Date of start of the registry  
Number of patients recruited by end of June 2009  
Number of patients on biologicals  
Expected registry duration  
General comment on the organization and any difficulties met in establishing the register  

Denmark

Registry already established?

Yes 
Coverage of the registry  
Systemic treatment considered  

Modality of data collection

 

Support

 

Contact persons  Tomas Norman Dam
Date of start of the registry  
Number of patients recruited by end of June 2009  
Number of patients on biologicals  
Expected registry duration  
General comment on the organization and any difficulties met in establishing the register  

Australia

Registry already established?

Yes
Coverage of the registry Nationwide
Systemic treatment considered Biologics and other systemic treatments

Modality of data collection

Web-based electronic form - www.psoriasis.asn.au

Support

Skin and Cancer Foundation Victoria, Epiderm, Australasian College of Dermatologists, Enabling Pharmaceutical Grants

Contact persons Chris Baker 
Date of start of the registry 1st February 2008
Number of patients recruited by end of June 2009 184
Number of patients on biologicals 131
Expected registry duration No end-date
General comment on the organization and any difficulties met in establishing the register  

Czech Republic

Registry already established?

Yes
Coverage of the registry All centers of biologic therapy for psoriasis in the Czech Rep.
Systemic treatment considered Biologic therapy

Modality of data collection

Web-based, eCRF

Support

Grants from Czech Dermatovenereology Society

Contact persons

Petr Arenberger – avemedica@email.cz

Spyridon Gkalpakiotis – spyridon.gkalpakiotis@fnkv.cz

Martina Kojanova – kojanova.martina@vfn.cz
Date of start of the registry 2005
Number of patients recruited by end of June 2009 469
Number of patients on biologicals 1400
Expected registry duration Continuing
General comment on the organization and any difficulties met in establishing the register  

Slovenia

Registry already established?

Yes: Registry of Slovenian Psoriasis Patients, treated with Biologics
Coverage of the registry Nationwide
Systemic treatment considered Biologics

Modality of data collection

Electronic form
Support

Governmental grant, support of Slovenian Association of Dermatovenerologists

Contact persons Tomaz Lunder
Date of start of the registry 1.6.2012
Number of patients recruited by end of December 2014 905
Number of patients on biologicals 879 
Expected registry duration Permanent 
General comment on the organization and any difficulties met in establishing the register All psoriasis patients treated with biologics nationawide are entered in the registry 

Austria

Registry already established?

Yes: PsoRA (Psoriasis Registry Austria)
Coverage of the registry Nationwide
Systemic treatment considered Biologicals, Small Molecules and Conventional Treatments including Phototherapy 

Modality of data collection

Electronic (web based data bank)
Support

Pharmaceutical Industry and grants from the Austrian Society of Dermatology and Venereology

Contact persons Peter WolfMartin Inzinger
Date of start of the registry 2004
Number of patients recruited by end of December 2014  
Number of patients on biologicals More than 1500
Expected registry duration Indefinite 
General comment on the organization and any difficulties met in establishing the register The registry is hosted by the Medical University of Graz, Austria