Forum for Nordic Dermato-Venereology Nr 3, 2018 | Page 7

Anette Bygum – Establishing a Clinical Trial Unit in Dermato-Venereology at Odense University Hospital, Denmark
Fig. 3. Site initiation visit in the Clinical Trial Unit
with sponsor, CRO-representative, physicians,
nurses, medical students and laboratory staff.
ers are more directly involved in research. This is brilliantly
illustrated by the following story:
President John F. Kennedy was visiting NASA headquarters
for the first time. While touring the facility, he introduced
himself to a janitor who was mopping the floor and asked him
what he did at NASA. “I’m helping put a man on the moon!”. It
is important to strive to attain a vision of the larger whole.
Databases
Patient consents and databases form part of the foundation for
research and the professional development of the department
and can also be seen as a strategy for the department to main-
tain the assigned regional and highly specialized functions.
The department has initiated and participates in established
clinical research databases containing patients with various
skin diseases:
Allergen Bank
Cutaneous Lupus Erythematosus + biobank
Danish Genodermatosis Database (upcoming)
Danish Melanoma Group
Dermbio (National Quality Assurance Database of psoriasis)
European Society for Cutaneous Lupus Erythematosus
Genodermatoses – regional research database and biobank
Hereditary Angioedema + biobank
Hereditary palmoplantar keratoderma and ichthyosis + bio­bank
Hyperhidrosis
National Database of Contact Allergy
NEXT Derma
Non histaminergic Angioedema + biobank
Porphyria cutanea tarda
Scabies
Teledermoscopy
Most of our databases are hosted at OPEN Odense Patient data
Explorative Network, which is a research infrastructure with
a mission to increase and strengthen clinical research in the
Region of Southern Denmark.
Forum for Nord Derm Ven 2018, Vol. 23, No. 3
Patient involvement and collaboration with patient
organizations
OUH puts patients first, also in terms of research. Two patient
representatives participate in our Research Committee with the
purpose of emphasizing the patient perspective and increase
research quality and relevance. Patients and relatives should
be involved in the planning phase of clinical studies, which
until now has been practiced in projects concerning psoriasis,
hyperhidrosis and pyoderma gangrenosum wounds.
Collaboration with Patient Organizations is an integral part
of our work, and especially we have had collaboration with
the following organizations: Hyperhidrose foreningen, Ikty-
osis foreningen Danmark, HAE Scandinavia, Danish Lupus
Association, Psoriasisforeningen, Ehlers-Danlosforeningen and
Ectodermal Dysplasia Patientforening Danmark.
As an example, we have had a close collaboration with the
Danish Patient Organization for hereditary angioedema (HAE)
since 2001, with yearly meetings, collaborative written patient
informations and webpages, questionnaires, development of
swelling calenders and later a smartphone application (app).
The patient association is now a Scandinavian organization,
and we are represented in the medical advisory board. After
initiating clinical studies, we have had meetings in Denmark
and abroad discussing clinical studies, and the genuine inter-
est of patients supporting and participating in these (Fig. 4).
Visibility on different platforms, including social
media
The department is visible on the hospital and university
platforms. The department’s clinic for sexually transmitted
diseases is active on Facebook. The collaboration with some
of the patient associations is also visible on social media.
OUH Talks is a recent initiative, where different themes are
livestreamed and later will be available on Youtube. OUH
U niversity C linics in the N ordic C ountries
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