scientific board meeting of psoriasis international network paris - friday july 2, 2010

SCIENTIFIC BOARD MEETING

OF PSORIASIS INTERNATIONAL NETWORK

PARIS - FRIDAY JULY 2, 2010

THANKS FOR YOUR INVALUABLE PARTICIPATION TO THE THIRD MEETING OF THE PSORIASIS INTERNATIONAL NETWORK.

THANKS TO YOU IT LOOKS LIKE A SUCCESS!

Under the aegis of the EADV Psoriasis Task Force

The Psoriasis International Network gathers dermatologists, rheumatologists, scientists, caregivers, patients and families involved in the psoriasis management.

It is a tool to develop and promote exchanges and facilitate international collaborations in the field of psoriasis

PSORIASIS INTERNATIONAL NETWORKwww.psoriasis-international.org

44 countries registrered on the website: • 29 patients associations + major patient federations (IFPA, EUROPSO and LATINAPSO)

• 27 medical groups + 18 SOLAPSO countries (Latin American Psoriasis Society)

75 countries participate actively in the Psoriasis International Network: Boards, news exchange, collaborative projects


3 Boards:• Scientific Board: composed by coordinators of the national psoriasis group• Advisory Board: permanent body of invited high-level experts (that sees to the ethical and scientific development of the network)

Pharmaceutical Board: partner industries committed to the development of clinical and therapeutic research in psoriasis (Today: Pfizer/Wyeth, Novartis

pharma, MEDAC)



N° of website visits/month:June 10: 22 500

Our link: The Newsletter No. subscribers: +3400 Recent Publications on psoriasis Focus On: highlights of the members’ main activities and projects, articles, collaborative works or any other topic of their interest. Events: the main events on psoriasis around the world News from the weboffice, medical groups and patient associations

Send us Send us

your email addresses your email addresses

so you can receive so you can receive

the newsletters the newsletters

and Focus Onand Focus On

[email protected]

Today we have 3 major points to discuss:

A. HOW TO EXPAND THE NETWORK

B. HOW TO ANIMATE THE NETWORK

C. CHOOSE THE COUNTRY RESPONSIBLE FOR THE SCIENTIFIC PROGRAMME OF PSO 2013


A. HOW TO EXPAND THE NETWORK ?


1.To identify in each country the chairpersons interested to take in a network on psoriasis

2.Chairpersons usually do not have the time to participate in the daily psoriasis


3. They propose to a young dermatologist to organise in their department 1 day or 1/2 day a week an outpatient clinic on psoriasis.

The Chairperson and the young consultant receive the news and the Focus On of Psoriasis International Network


4. A National Network is built between the departments involved.

This National Network is coordinated in different ways according to the country, sometimes under the umbrella of the National Society of Dermatology

National Psoriasis Networks can include:-Rheumatologists-Nutritionists-Psychiatrists-Patient associations


5. OF GREAT PRACTICAL IMPORTANCE

The email addresses of each participant are to be sent to the webmaster of Psoriasis International Network so that all can receive the news and Focus On

[email protected]


6. The Country Websites

A FREE WEBSITE IN YOUR LANGUAGE CAN BE OFFERD BY THE FOUNDATION IF NEEDED

CONNECT THIS WEBSITE OR A PREEXISTING ONE TO THE PSORIASIS INTERNATIONAL WEBSITE


7. AN IMPORTANT CHOICE: THE COORDINATOR7. AN IMPORTANT CHOICE: THE COORDINATOR

A GOOD COORDINATOR IS:• RESPONSIBLE FOR A THEMATIC OUTPATIENT CLINIC• ABLE TO SPEND HALF DAY A WEEK FOR THE COORDINATION ACTIVITIES• TRAINED IN CLINICAL AND/OR THERAPEUTIC RESEARCH• ACCEPTED BY OTHERS ON A FRIENDSHIP BASIS• ABLE TO BE THE LINK WITH THE INTERNATIONAL ACTIVITIES OF THE NETWORK


B. HOW TO ANIMATE THE NETWORK ?


TO ORGANISE THE STRATEGY OF COMMUNICATION AT THE NATIONAL LEVEL FOR DISCUSSING DIFFICULT CASES, MAKING CLINICAL OR THERAPEUTIC RESEARCH, INITIATING INTERNATIONAL COLLABORATIONS…….


TO ORGANISE A YEARLY NATIONAL MEETING

TO PARTICIPATE IN LOBBYING ACTIONS FOR EXEMPLE TO

OBTAIN THE SUPPORT OF EU


AROUND THE WORLD THE MAIN ACTIVITIES OF THE NATIONAL PSORIASIS GROUPS ARE:

- Clinical or therapeutic studies- Exchanges around difficult cases- National or International surveys- National guidelines - Discussion on the good use of the treatments- Help to the creation of Patients’ Associations- National psoriasis meeting (once a year)- Information to the patients- to share experiences at the International Psoriasis Congress every 3 years


A FIRST STEP OF MAJOR IMPORTANCE:

TO BUILD A COMMON MINIMAL QUESTIONNAIRE AS A BASIS FOR ANY SURVEY AND PROSPECTIVE

STUDIES


THE ACTIVITIES OF RESEARCH OF THE NETWORK WILL BE, WHEN POSSIBLE, SPONSORED BY OUR

PARTNERS OF THE PHARMACEUTICAL BOARD

NOW:PFIZER/WYETHNOVARTIS PHARMA

MEDAC


Possible projects of clinical

or therapeutic research aiming to be supported by Pharmaceutical Industries

partners:


* Characterisation of Psoriasis phenotypes in different part of the World: 6 or more?

* An international register on Psoriasis in Childhood with therapeutic evaluation using a treatment algorythm

* An International register on difficult to treat localisations:

• palmo- plantar psoriasis, • palmo-plantar pustular psoriasis• scalp psoriasis• Flexural psoriasis• Nails psoriasiswith therapeutic evaluation using a treatment

algorithm



• Revalidation of the Pso score

• Evaluation of the best strategy of use of Methorexate

• Evaluation of the efficacy and the tolerance of the association of low doses of systemic treatments

•……………………………. And many other ones

scientific board meeting of psoriasis international network paris - friday july 2, 2010

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