Aim 1: Harmonized phenotyping.
After our first meeting that included an unanimous decision that harmonization of phenotyping of pustular psoriasis is an unmet need in all of Europe, we created and circulated a consensus CRF among all participants of the meeting. Subsequent to detailed peer review, a new version was created that will be used in the next ERASPEN meeting with validation of the new CRF on 10 cases of acrodermatitis continua suppurativa Hallopeau, palmoplantar pustulosis and generalized pustular psoriasis phenotyped by each participant. This meeting will take place in London on the 19th of December 2014. Subequently, we will translate the paper CRF to an electronic form that will be the data entry mask for the ERASPEN database constructed in Aim 2.
Aim 2: Web platform with underlying database.
A safe web portal was created that allows secure entering of data and anonymized storage of patient data. A customized database for the ERASPEN patients was created. After the final decision about the harmonized case report form, we will create a web form that all participating ERASPEN members will have access to for entering their patients. Each member will be able to view statistics and the original data of his own cases, as well as the statistics, phenotype, treatments and co-morbidities of all other cases.
Aim 3: Virtual biobank.
At the first ERASPEN meeting in September 2014, the group agreed to create a virtual biobank, as well as linking clinical data to DNA results. The infrastructure for the virtual biobank is available already. Subsequent to submission and ethical permission of the clinical ERASPEN sample collection study in each country, we will be able to begin entering of available samples’ data.