Forum for Nordic Dermato-Venereology Nr 3, 2018 | Page 8

Anette Bygum – Establishing a Clinical Trial Unit in Dermato-Venereology at Odense University Hospital, Denmark Fig. 4. Photo taking in June 2018, where the board of HAE Scandinavia met with staff from the HAE Centre and our head nurse to discuss patient database, future meetings and upcom- ing research projects. Talks about The European Reference Networks and Precision Medicine are relevant in this context. National Exerimental Therapy Partnership, NEXT NEXT is a national public-private partnership working to strengthen Denmark as a preferred country for early clinical research sponsored by the pharmaceutical industry. With sup- port from Innovation Fund Denmark and medical companies, all departments of dermatology in Denmark participate in NEXT Derma performing early clinical trials. A key issue has been establishment of a prospective database with patients suffering from atopic dermatitis and psoriasis. The patients are given written information about NEXT and access to a web-based platform, where they can have further information and decide, whether they would be interested in participating in clinical research trials. In case a clinical trial is planned, the responsible dermatologist will contact selected patients fulfilling inclusion criteria and ask whether they want to par- ticipate. At any time the patient can withdraw consent and be deleted from the database. PREmedico and CAKS The department participates in a local collaborative net- work on Precision medicine, PREmedico, with the purpose of integrating precision medicine in all hospital units. Also research is part of the PREmedico collaboration focusing on cancer and rare diseases. Recently a Centre was established for inherited and complex diseases CAKS, defining follow-up programs and responsible clinicians for selected disorders. The department participates in a Danish multidisciplinary collaboration on prognostic factors and personalised med- icine among patients with chronic inflammatory diseases including psoriasis. A yearly PREmedico symposium is being held, where data from our regional genodermatoses database is presented. Dr. Habil. Julia Reichelt from Epidermolysis Bullosa House, Salzburg in Austria, was a keynote speaker this year and gave a presenta- tion with the title: Gene therapy for epidermolysis bullosa 70 U niversity C linics in the N ordic C ountries as a model of curative treatment of inherited skin diseases. Recently Julia Reichelt has become an Adjunct Professor at our department, and we are looking forward to explore this new collaboration on genodermatoses. In September 2 physicians and 2 nurses from our department will go to Salzburg and visit the dermatology clinics and research lab. Reference 1. Hirsch T, Rothoeft T, Teig N, Bauer JW, Pellegrini G, De Rosa L, et al. Regeneration of the entire human epidermis using transgenic stem cells. Nature 2017; 551: 327–332. Adherence and E-Health in psoriasis In collaboration with our Adjunct Professor Steven Feldman, Department of Dermatology, Wake Forest Medical Center, North Carolina and Centre for Innovative Medical Technology, clinical studies are performed to increase patient satisfaction and adherence using E-Health. An interdisciplinary research team comprising derma- tologists, pharmacists, antropologists and medical de- vice engineers has been established to study psoriasis patients’ use of prescribed antipsoriatic drugs. We have conducted drug utilization studies using the national health data registries to report psoriasis patients’ real-life use of antipsoriatic drugs. A focus group study provided insights into psoriasis patients’ experiences with use of topical drugs, where patients reported forgetfulness and lack of motivation as main reasons for low adherence. In collaboration with the pharmaceutical industry, smart- phone app was developed to study the effect on psoriasis patients’ adherence to topical therapy with calcipotriol/ betamethasone dipropionate cutaneous foam. The app was tested in a single-center randomized controlled trial, which showed that the app improved psoriasis patients’ adherence to use of the topical drug as well as reduced severity of pso- riasis. This promising outcome gives support to initiatives to develop E-Health technologies to support patients’ adherence to topical treatment for other more chronic skin diseases like Forum for Nord Derm Ven 2018, Vol. 23, No. 3