The SHARP FAP enables analysis of data from individual registries, without patient data leaving the country of origin, thus respecting data privacy rules. The SHARP FAP uses a distributed model, in which R-code is submitted to the host institution and summary statistics are returned.  These summary statistics are combined from registries across Europe via formal meta-analysis, resulting in powerful and clinically meaningful results.

SHARP CRC engaged with ITTM (Information Technology for Translational Medicine S.A.) for the set-up of a Federated Analysis Platform and harmonised data model based on the Observational Medical Outcomes Partnership (OMOP) common data model (CDM).

So far 24 European countries have engaged in the SHARP FAP – providing a platform for analysis of more than 14,000 patients with severe asthma.

SHARP Central

SHARP Central (started in 2018) is a novel registry of patients with severe asthma in European countries founded by the CRC SHARP. It helped countries that did not yet have their own national severe asthma registry to save time and funding and to quickly become active.

The SHARP Central registry has the following properties:

• each member country has its own database
• each country has unrestricted access to its own data
• a fixed set of pseudonymised patient data is entered via a uniform electronic case report form (e-CRF) with annual follow-up
• data are suitable for communication with the SHARP Federated Analysis Platform (FAP).

So far 14 countries are part of SHARP Central: Croatia, Czech Republic, Estonia, Greece, Hungary, Latvia, Lithuania, The Netherlands, Poland, Romania, Serbia, Slovenia, Sweden and Turkey. 3 countries are in process of integrating SHARP Central: Bosnia and Herzegovina, Ireland and Switzerland

The current number of patients is 4,311.

SHARP registries and patients: 

• SHARP central registry: 4311 patients from 14 countries
• Italy: SANI registry with 2275 patients
• Spain: GEMA registry with 979 patients
• France: RAMSES registry with 2010 patients
• Belgium: BeSAR registry with 1674 patients
• Denmark: DSAR registry with 1200 patients
• Iceland: ISAR registry with 120 patients
• Portugal: RAG registry with 219 patients
• Switzerland: Swiss GAN with 459 patients
• United Kingdom: UKSAR registry with 1551 patients

What is the goal?

The goal it to have access to an overview of the data/variables collected in the different registry and among them which are accessible (comprised in/aligned with the SHARP CDM) for research.

How will it be used?

SHARP members can connect to the “data catalogue” and ask research questions based on the accessible/available variables.

What does it contain?

There are 3 tables:

• One with the list of variables that align with the SHARP Common Data Model and whether a registry collect the variables
• One with the list of administered drug therapies
• One with details about the single administered ingredients within a therapy.

Only members of the SHARP CRC have access to the SHARP Data catalogue.

To become a SHARP member and access the information please contact the SHARP project manager.