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
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.se |
| 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 |
| 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 Wolf, Martin 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 |
