The Prognostic Natural History Study (PNHS) team has had a busy few months since the beginning of the year focusing on the initiation and recruitment of participants into the clinical study.
The team at VU medisch centrum (VUmc) has recruited the first PNHS participant in October 2018. Since the first recruitment, the VUmc team has already contacted 111 participants of which 45 have already consented.
A major milestone was achieved for the PNHS in early April since both Barcelonaβeta Brain Research Center (BBRC) and the University of Edinburgh (UEDIN) consented their first participant. Congratulations to the teams for their hard work! Three sites are now actively enrolling participants in Amsterdam, Barcelona and Edinburgh.
Two more sites – the University of Geneva (UNIGE) and CHU de Toulouse (CHUT) – have received all approvals and will be activated in the coming days. Other wave 1 sites are lined up for approvals and the expectation is that these main wave 1 sites will all be actively recruiting before the end of the second quarter in 2019. The PNHS team is locking down additional details of its management for participation of wave 2 sites and the inclusion of non-EPAD cohorts as parent cohorts for the PNHS.
We are all looking forward to the months ahead and hope to share great news and outputs very soon – stay tuned!