Registries for Rare Disorders

Datum: 25-01-2011 - 26-01-2011

Locatie: Brussels, Belgium

Omschrijving:

2nd Workshop on Registries for Rare Disorders

The adoption of the Regulation on Orphan Medicinal Products 10 years ago has led to the granting of EU Marketing Authorisations for around 70 orphan drugs. However, patients across Europe do not have equal access to these innovative treatments. The more recent European Commission Communication on Rare Diseases and the Council Recommendation on Rare Diseases have set rare diseases as a  top priority in terms of public health policies and aim to address this imbalance of access to orphan drugs in the EU. Member States have agreed to implement a series of actions that will be overseen by the newly-established European Union Committee of Experts on Rare Diseases (EUCERD).

Amongst the tools available to reach these general goals, patients’ registries are of utmost importance: the various data that they can provide could not only demonstrate  the reality of a disease, but also support research, monitor the safety of a treatment/medicine and generate evidence on their effectiveness. This data can, in turn,  help guide HTA agencies to properly allocate public money in the optimum way. Eventually, patients’ registries could also be used to create indicators to assess the quality of healthcare policies for rare conditions.

The workshop will therefore focus on:
- The use of registries to support patients access
- The use of registries to meet payers' needs
- The role of registries to support scientific advances
 

Meer informatie: http://www.epposi.org

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