Fostering national and regional networks
Our main goal is to improve the quality of healthcare for patients suffering from chronic inflammatory skin diseases as well as their access to quality skin care. As such, SPIN promotes the development of national and regional networks around a specific disease (eg. psoriasis, atopic dermatitis) and provides assistance in their creation. Here below, you will find some tips on how to create and develop a national network.
Regional networks such as SOLAPSO (Latin American Society of Psoriasis), PsoMaghreb, West-African Psoriasis Group and the Arab Psoriasis Network have also been created in collaboration with SPIN.
HOW TO CREATE A NATIONAL GROUP?
Suggestions made at the SPIN founding meeting, November 18, 2005
A national psoriasis is a task force composed by dermatologists interested in psoriasis, atopic dermatitis or any other chronic inflammatory skin diseases, whether from public or private practice, depending on the country.
The group may also include other healthcare professionals such as rheumatologists, nutritionists, psychiatrists, patient associations, ...
National psoriasis develop various activities, such as clinical or therapeutic studies, national and international surveys, national guidelines, discussion on the good use of treatments, yearly national meetings, information to the patients, experience sharing at the SPIN Congress.
The choice between a more formal or informal structure or type of organisation will largely depend on the legal framework and tradition of each country. Here you can find some examples of how a national group can be set up.
On an informal basis: a group of friends that start up a working group on psoriasis
On a formal basis:
- contact all dermatologists in your country and survey their interest in being part of a work group on psoriasis or atopic dermatitis, for instance
- organise a national meeting to discuss the goals of the group, set up the agenda and schedule the actions to take
- seek some official recognition and/or contact the respective national society of dermatology to form a specific psoriasis work group within its structure.
Please notice that in any case, some form of official recognition is usually useful to obtain proper funding for the envisaged actions.
HOW TO FOSTER THE DEVELOPMENT OF A NATIONAL NETWORK?
You may start your national network by:
- Setting up dedicated outpatient consultations 1 day a week in your department for psoriasis, atopic dermatitis, etc., and support the creation of such consultations in each department of dermatology in your country
- Link at the national level the consultants in charge of these outpatient consultations to form a national network
- Join SPIN
- Organise national meetings to exchange on difficult cases, set up nationwide surveys, guidelines, discuss on clinical and therapeutic research projects
- Provide information and support to local/national patient associations
Example of activities to further develop your national network:
- A website facilitating discussion on difficult cases, clinical or therapeutic research, international collaborations
- National or International surveys to collect knowledge on patient needs, treatments, educational tools...
- National guidelines and discussion on the good use of the treatments to improve the access to quality health care for patients
- Encourage the creation of patient associations and/or provide information and support to them
- Sharing experiences at the SPIN Congress every 3 years
Fostering dedicated psoriasis outpatient consultations
Thematic consultations are of great usefulness. In order to develop specific care as well as therapeutic and clinical and therapeutic research it is necessary to be able to spend some time with each patient. This is nearly impossible in classical polyvalent outpatient clinics. Thus, it seems very useful to organise specific consultations for psoriasis, atopic dermatitis and other chronic inflammatory skin diseases in each department of dermatology.
The patients suffering from this disease and coming to the polyvalent dermatology clinic get an appointment to the next dedicated outpatient consultation. By this way, it is possible to talk with the patients, to fill surveys initiated for clinical and therapeutic research projects, to test new drugs and to develop clinical guidelines.
Here is a useful document for those dermatology departments wanting to create dedicated outpatient consultations.
- PSO 2007: 1013 participants from 65 countries, organised by the French Psoriasis Group
- PSO 2010: 1482 participants from 81 countries, organised by the German Psoriasis Group
- PSO 2013: 1508 participants from 88 countries, organised by Psonet European Psoriasis Registry Network
- PSO 2016: 1213 participants from 81 countries, organised by SOLAPSO Latin American Society of Psoriasis
- SPIN 2019: 25-27 April, 2019 in Cité des Sciences – Paris, organised by the Spanish Psoriasis Group
World Map Directory of Psoriasis Medical Resources
This SPIN website feature is an interactive world map directory based on the survey "World Listing of Psoriasis Medical Resources for Patients".
This ongoing survey will serve to identify the availability of the following services in dermatology departments:
- dedicated outpatient consultations
- interdisciplinary consultations
- available treatments
- therapeutic education
- collaboration with patient associations
How can dermatologists, GPs and patients use this interactive directory?
- Choose a country
- Zoom in and choose a pinned dermatology centre
- For that centre, you will see:
- how to get an appointment
- which specific medical resources are provided to psoriasis patients
- location and contact information
- You can also choose to filter the information by specific medical resources
Surveys & Studies
A main goal of the SPIN is to engage the network in surveys and clinical and therapeutic research programmes.
Up to date, SPIN has carried the following surveys:
- 2011 - Survey on the national organisation of psoriasis-related activities: answers from 50 countries
- 2012 Worldwide Survey on the Use of Methotrexate in the Treatment of Psoriasis (R. Gyulai, Szeged and Pécs Universities): 490 participants from 65 countries ; results published on JEADV
- Ongoing since 2013 - World Listing of Psoriasis Medical Resources for Patients: 330 dermatology centres listed from 67 countries
- 2015 - Therapeutic Patient Education in Psoriasis - a worldwide survey: 262 responses from 71 countries
- Ongoing since 2016 - Current practice of phototherapy in psoriasis: a worldwide survey among dermatologists
Symposia with SPIN KOLs
One of the main tasks of SPIN is to utilise all opportunities to enhance and harmonise dermatology training in clinical and therapeutic research in the field of chronic inflammatory skin diseases, by proposing symposia with SPIN KOLs to selected national and international congresses or at the request of national or regional networks.
So far, SPIN has organised so far the following symposia:
- 3 symposia on "Clinical and Therapeutic Research in Psoriasis, a worldwide challenge":
- 1st Latin American Congress of Psoriasis (Dec. 1, 2012)
- 13th Conference of the Pan-Arab League of Dermatology (Feb 23, 2013)
- 2nd Latin American Congress of Psoriasis (Dec.4, 2014)
In collaboration with the EADV Psoriasis Task Force, SPIN has contributed to the elaboration of the programmes for the following EADV symposia:
- Symposium on "Safety in Psoriasis: the importance of registries" at EADV Congress in Istanbul (Oct 5, 2013)
- Symposium on "Long term treatment safety and efficacy outcome in psoriasis" at EADV Congress in Amsterdam (Oct 11, 2014)
Upcoming SPIN symposia:
- 1st Psoriasis Symposium of the Psoriasis Association of Bosnia and Herzegovina (Oct 14, 2017)
- 2nd Annual Meeting of the Egyptian Society for Psoriasis (Nov. 16, 2017)
Collaboration with patient associations
SPIN encourages the development of patient associations and is available to collaborate with them on any basis they may need. SPIN gathers at present around 43 patient associations worldwide and collaborates with all the major federations of patient organisations, such as IFPA, EUROPSO, LATINAPSO, and PsorAsia.
SPIN also relays information from patient associations around the World Psoriasis Day on October 29th, in order to raise awareness to this serious disease. Likewise, to promote awareness at both national and international level, we share patient associations’ activities, projects and events via our newsletters and "Focus On".
SPIN, as an international organisation, can also provide support to patient associations by helping them in advocacy efforts and awareness campaigns.
- 2020/03/19 Focus on...Statement on the Coronavirus (COVID-19) OutbreakNews:Statement on the Coronavirus (COVID-19) Outbreak
- 2020/03/13 Focus on...In Memoriam-Prof Dr Nelida Aurora Raimondo (1952–2020)News:In Memoriam-Prof Dr Nelida Aurora Raimondo (1952–2020)
- 2019/10/29 Focus on...World Psoriasis Day 2019
- 2019/08/12 Focus on...Latin American Clinical Practice Guidelines on the Systemic Treatment of Psoriasis
- 2019/06/03 Focus on...News from our SPIN Columbian members
Prof Nelida Aurora Raimondo
- 2020/03/13 Focus on...In Memoriam-Prof Dr Nelida Aurora Raimondo (1952–2020)News:In Memoriam-Prof Dr Nelida Aurora Raimondo (1952–2020)
News from the web office
- 2017/06/05PIN becomes SPIN - Skin Inflammation & Psoriasis International Network
- 2016/10/29PSO 2016 Congress - Webcasts Available!
- 2016/05/26PIN Survey on Phototherapy
- 2016/02/20PIN Study on Therapeutic Patient Education
- 2016/02/19World Directory of Psoriasis Medical Resources - February 2016 Update
- 2019/04/18 Focus on...SPIN Congress 2019 in Paris coming soon
- 2018/07/16SPIN Symposium at the Spring continental meeting - Tehran, 25-27 April 2018
- 2018/02/222nd National Meeting of the Egyptian Society for Psoriasis
- 2018/02/211st Psoriasis Symposium - Sarajevo 2017
- 2017/06/2815th São Paulo Meeting of Psoriasis and Vitiligo
News from medical groups
- 2018/04/183rd Turkish National Psoriasis Symposium
- 2017/06/21Brazilian Center for Psoriasis Studies joins SPIN!
- 2017/06/21Costa Rica Psoriasis Group - Meet them!
- 2017/02/02Works of the 1st Senegalese Psoriasis Day published!
- 2016/07/29Swiss S1 Guidelines for Systemic treatment of psoriasis vulgaris
News from patients associations
- 2017/02/08France Psoriasis - 2016 World Psoriasis Day
- 2016/05/26Senegal Patients Association joins PIN!
- 2015/08/04Epidermia Greece: a new partner association of PIN
- 2015/08/01Canadian Association of Psoriasis Patients joins PIN!
- 2015/04/09AEPSO Argentina launches digital map to find people with psoriasis in the country
Recent publications on Psoriasis and Atopic Dermatitis
A cross-sectional analysis of skin cancer risk in patients receiving narrow-band ultraviolet B phototherapy: an evaluation of 100 patients.
Arch. Dermatol. Res.. 2020 May , 312, (4):249-253.
Narrow-band ultraviolet B (NB-UVB) phototherapy is an effective and widely used treatment modality for psoriasis and other inflammatory skin diseases. The carcinogenic effect of PUVA treatment has been investigated extensively, but there is very scarce data about the role of NB-UVB in the development of skin cancer. The aim of this study was to investigate the potential carcinogenic risk of NB-UVB therapy in various skin disorders. In this cross-sectional study, we evaluated 100 patients (...)see on pubmed
A potential association between psoriasin to rs4819554 of IL-17RA gene polymorphism in psoriasis Egyptian patients.
Arch. Dermatol. Res.. 2020 May , 312, (4):273-281.
Interleukin 17 (IL-17) is one of the pro-inflammatory cytokine. Psoriasin is a noticeably over-expressed protein found in the skin lesions of psoriatic patients. Our current study was planned to examine the association of (- 947 A/G) single nucleotide polymorphism (SNP) in IL-17RA promoter region (rs4819554) with psoriasis susceptibility in Egyptian psoriatic patients. Our study included 100 patients and 100, age as well as sex matched, control groups. IL-17RA SNP association was studied (...)see on pubmed
Repurposing an old drug for new use: Niclosamide in psoriasis-like skin inflammation.
J. Cell. Physiol.. 2020 Jun , 235, (6):5270-5283.
Drug discovery is an onerous, extremely expensive, and time-consuming process. Instead, drug repurposing is an attractive strategy for exploiting novel indications for a drug beyond its original use. The untapped potential of drug repurposing compensates the barriers associated with the drug discovery pipeline. Psoriasis is an autoimmune skin disease, where hyperproliferation of keratinocytes and exaggerated immune responses are the important hallmarks of the disease. Extensive in vitro and (...)see on pubmed
Drug delivery system of dual-responsive PF127 hydrogel with polysaccharide-based nano-conjugate for textile-based transdermal therapy.
Carbohydr Polym. 2020 May 15, 236:116074.
Pluronic F-127 based dual-responsive (pH/temperature) hydrogel drug delivery system was developed involving polysaccharide-based nano-conjugate of hyaluronic acid and chitosan oligosaccharide lactate and applied for loading of gallic acid which is the principal component of traditional Chinese medicine Cortex Moutan recommended in the treatment of atopic dermatitis. The polysaccharide-based nano-conjugate was used as pH-responsive compound in the formulation and its amphiphilic character (...)see on pubmed
Skin of atopic dermatitis patients shows disturbed β-glucocerebrosidase and acid sphingomyelinase activity that relates to changes in stratum corneum lipid composition.
Biochim Biophys Acta Mol Cell Biol Lipids. 2020 Jun , 1865, (6):158673.
Patients with Atopic Dermatitis (AD) suffer from inflamed skin and skin barrier defects. Proper formation of the outermost part of the skin, the stratum corneum (SC), is crucial for the skin barrier function. In this study we analyzed the localization and activity of lipid enzymes β-glucocerebrosidase (GBA) and acid sphingomyelinase (ASM) in the skin of AD patients and controls. Localization of both the expression and activity of GBA and ASM in the epidermis of AD patients was altered, (...)see on pubmed
Physiology and Pathophysiology of Itch.
Physiol. Rev.. 2020 Jul 01, 100, (3):945-982.
Itch is a topic to which everyone can relate. The physiological roles of itch are increasingly understood and appreciated. The pathophysiological consequences of itch impact quality of life as much as pain. These dynamics have led to increasingly deep dives into the mechanisms that underlie and contribute to the sensation of itch. When the prior review on the physiology of itching was published in this journal in 1941, itch was a black box of interest to a small number of neuroscientists (...)see on pubmed