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Final EPIRARE Deliverables

DELIVERABLE 1.1
The current situation, the challenges and the expectations on Patient registries and Databases. I - The current context

DELIVERABLE 1.2
The Current Situation, the Challenges and the Expectations on Patient Registries and Databases. II - Results of the Patient Survey

DELIVERABLE 1.3
The current situation, the challenges and the expectations on Patient registries and Databases. III - Activities and needs of existing RD registries

DELIVERABLE 1.3
Questionnaire

DELIVERABLE 1.4
Statistical Analysis of the EPIRARE survey data

DELIVERABLE 1.5
Data mining on the EPIRARE survey data

DELIVERABLE 2.1
The Legal and Ethical Framework of EU Rare Disease Policies

DELIVERABLE 2.2
Epidemiological and public health considerations for the EPIRARE briefing document on RD and data protection

DELIVERABLE 2.3
PROPOSAL for AMENDMENTS to the Draft Personal Data Protection Legislation

DELIVERABLE 2.4
BRIEFING PAPER TO THE EUROPEAN PARLIAMENT

DELIVERABLE 3
Proposed Aims, Scope, Governance and Sustainability options for a European Platform for Rare Disease Registries

DELIVERABLE 4
Guidelines for data sources and quality for RD Registries in Europe

DELIVERABLE 5
Developing a European Platform for Rare Disease Registries

DELIVERABLE 9.1.1
Overview of the scientific literature on Common Data Elements in the Rare Diseases Registries setting

DELIVERABLE 9.1
Report on the survey on Common Data Elements

DELIVERABLE 9.1
Questionnaire

DELIVERABLE 9.1
Report on the survey on Common Data Elements

DELIVERABLE 9.2
Statistical Analysis of the EPIRARE Survey on Registries Data Elements

DELIVERABLE 9.3
Common Data Set and disease-, treatment and other specific modules.



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