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European network for research on alternating hemiplegia in childhood for promoting SMEs integration

Final Report Summary - ENRAH-SME (European Network for research on alternating hemiplegia in childhood for promoting SMEs integration)

ENRAH was a patient driven network. The motivation of the project team was the key to the success and in achieving all project goals under the tight deadlines and with insufficient project budget.

The electronic on line format (required to facilitate and secure data collection and analysis) of the registry was subcontracted .The vendor - Information technology (IT) provider HC Forum, France - was selected in a competitive call among five Small and medium-sized enterprises (SMEs) candidates. Online secured database with 157 cases / 155 coded records (patient are identifiable through the data providing centre) which contain:
1) general information (60 parameters) sufficient to categorise the patient;
2) detailed longitudinal clinical information (186 parameters) where available - follow up at 2, 12, 18 and above 18 years;
3) results, if any, of mutation analysis;
4) links to bio-data ( blood samples of AHC patients available at five of the data providing centres).
The ENRAH registry organisation was set up to target all ages patients with possible AHC diagnose and includes a number of adults up to 51 years. Patent records validated and categorised as typical or atypical. It was not possible to start analysis of the Registry due to the IT product malfunction.

AHC is symptomatically diagnosed and not well recognised by medical professionals. There might be a large number of AHC affected people in all ages which await a proper diagnose. Within two years we have identified over 200 cases and catalogued 157 patients from 8 EU countries in the ENRAH registry. This is an achievement exceeding our best expectations at the start of the project.

In France, the Czech Republic and Italy a higher, than the registry average , number of identified AHC cases as a proportion of the country's inhabitants was identified. We attribute these results to the countries well established system for AHC diagnosis but also to the long history of AHC patient advocacy and the involvement of the patient organisations AFHA and AISEA as project partners.

ENRAH for SMEs involved clinical centres with expertise in rare paediatric neurological diseases - an area little known to the European Commission's programmes. Based on the experience gained during the ENRAH project, SMEs are very keen in receiving information and in participating in projects in this area and under the European Commission's programmes.