BUR-EB

06/08/2024

📣Take part in BUR-EB project to improve EB care in Europe📝

BUR-EB's new study aims to assess patients’ quality of life and the financial burden of EB on their families.

25/04/2023

The results of the study will be published after final analysis in the form of scientific articles in peer-reviewed journals or as presentations at national and international conferences.
The project is expected to result in about 9 scientific publications.

25/04/2023

The overall strategy of BUR - EB is designed to provide a flexible network platform to support the collection, evaluation and dissemination of results within and outside the network.
A short report on scientific progress and technical achievements will be requested from each partner every six months.
Specialised online project management tools, such as Microsoft Teams or Basecamp, will be used to share all project-related information.
They will be used to share all project-related communication (calendars, meetings, messaging, collaboration and document storage, project lists, etc.).

25/04/2023

Patient journey maps (=schemas to reflect the care pathway) will be developed by type of EB
through an iterative process: online focus groups with clinicians and online workshops with EB patients and their carers.
A draft of the patient journey maps will be developed among participants, using
asynchronous online participation (questionnaires, social networks or emails), until consensus on design and content is reached.

25/04/2023

A comparison of the burden of BE today and 10 years ago will be made to reflect possible changes due to the introduction of new treatments, policies or models of care.
Possible causes of these changes will be analysed, as well as the impact of COVID - 19.
Results: analysis of the socio-economic burden of BE in six countries.

25/04/2023

A cross-sectional data collection of EB patients and their carers will be carried out and they will be invited to fill in an anonymous online questionnaire.
The link to the questionnaire will be sent by email and will also be published on websites and in the press.

25/04/2023

Plan to develop tools to collect data on epidermolysis bullosa (EB) burden for analysis in later stages of the project. The tools include a questionnaire to collect data on resource utilisation and patient-reported outcomes.

25/04/2023

The Methods review component consists of updating the methods and tools developed in the BURQOL-RD project between 2011 and 2013, which were used to measure the socio-economic burden of rare diseases.

16/02/2023

Introducing the consortium...

👉The Health Economics Research Center ( ) has developed cost-of-illness studies in various RDs and immune-mediated dermatological conditions. The group validated tools to assess HRQoL, well-being, care-related QoL, productivity and PREM, and developed country-specific value sets for preference-based HRQoL measures for use in economic evaluations.

16/02/2023

Introducing the consortium...

🏫Universitatsklinikum Freiburg has been involved in medical care and diagnosis of EB for more than 15 years. The team has been treating at least 100 cases per year and has access to a cohort of more than 1000 EB patients. UKF has recently conducted a large retrospective study of clinical characteristics and epidemiology burden of EB in Germany. 🇩🇪

16/02/2023

Introducing the consortium...

🏥 👧 Gesù Paediatric Hospital (OPBG) coordinates the largest EB reference center in Italy, 🇮🇹 where more than 200 EB patients are followed and the head of the Dermatology Unit and Rare Skin Diseases reference center. Clinical research activities include evaluation of quality of life and family disease burden in rare skin disorders.

16/02/2023

Introducing the consortium...

🇫🇷 The center at hospital, is an expert structure for genetic diseases with cutaneous expression and their chronic evolution throughout an individual’s life. The group is particularly involved in the development of burden-scores in patients with rare skin diseases and in the evaluation of their social impact on the daily life of the patients and their families. 👨‍👩‍👧‍👦👨‍👩‍👧‍👧