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| Abstract |
| 1. General objectives |
| The general objective of this project is to set up a European network of treatment centres of rare bleeding disorders (RBDs), exploiting the potential of the existing database on RBDs called the Rare Bleeding Disorders Database (RBDD) by extending its proven organisational capacity and experience in collecting pertinent data. |
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| 2. Strategic relevance and contribution to the public health |
| Only limited clinical information on rare bleeding disorders (RBDs) was available until the 1980s. Increasing interest in RBDs has created a huge amount of non-homogenous data not suitable for statistical analysis. The purpose of writing guidelines is to assist the clinician in patient management by aligning best practice with the best available medical evidence. |
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| 3. Methods and means |
| The main objective of the project; to create a comprehensive database on RBDs, will be achieved by inserting data into an online database by partner centres participating in the project. |
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| 4. Expected outcomes |
The end result after three years of this project will be the creation of an online database geared to sharing data of proven efficacy and certainty, while safeguarding privacy. Data contained in the network database will be analysed through the creation of specific queries, together with final reports containing information on:
 optimisation of treatment;
effectiveness and modes of prophylactic treatment;
complication of treatment;
standardisation of diagnostic tests;
genetic analysis.
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