OPEN Research Support
head

Physician
Anne Stockmann
The Department of Dermatology and Allergy, Odense University Hospital, Denmark


Project management
Project status    Open
 
Data collection dates
Start 07.07.2025  
End 07.07.2035  
 



Porphyria cutanea tarda database

Short summary

The Department of Dermatology I and the Allergy Centre are responsible for diagnosing patients with PCT and EPP and we will include these patients in the database.


Rationale

PCT and EPP are caused by metabolic disturbances that result in elevated levels of porphyrins in body tissues, including the skin. Exposure to visible light can trigger skin reactions such as discomfort, redness, and, in some cases, blisters and ulcers. The database aims to collect information related to PCT and EPP. The purpose of the database is to improve diagnostic evaluation, develop new analytical methods for enhanced diagnosis, and improve future treatment and counseling for patients with Porphyria Cutanea Tarda (PCT) and Erythropoietic Protoporphyria (EPP).


Description of the cohort

Patients with PCT or EPP from the Department of Dermatology and Allergy, Odense University Hospital Denmark.


Data and biological material

The collected information includes skin symptoms, quality of life, comorbidities that may be present in individual cases (e.g., common skin cancer, osteoporosis, diabetes), results from blood, urine, and stool tests, imaging diagnostics (e.g., liver ultrasound and X-rays), and treatments for PCT and EPP.