We are delighted to announce the appointment of Susanne Grampe to the role of IPPOSI Executive Assistant. Susanne takes over from Karen Munnelly, and is also currently enrolled as a student in the IPPOSI Patient Education Programme. We also welcome three new IPPOSI board members – Julie Power of Vasculitis Awareness Ireland, Neil Johnson of CROI, the West of Ireland heart Foundation, and Dr. Colm Galligan of MSD Ireland. You can find more on those appointments here.
Rare Disease Day 2018
To celebrate and highlight Rare Disease Day 2018, IPPOSI will be taking part in a number of events:
The National Clinical Programme for Rare Diseases is hosting a workshop on clinical research on 23 Feb 2018. Keep an eye on the IPPOSI website for updates on this.
On January 12th IPPOSI was represented at the 2nd eHealth Joint Ecosystem meeting. The theme was ‘Exploring north/south border collaboration opportunities & the impact of the GDPR’. Many of the presentations from the day are available, as is this report of what unfolded. Further details of IPPOSI’s involvement in this meeting are available here.
On January 22nd we had the year’s first meeting of the Irish EUPATI National Platform which was attended by more than 40 people, and on January 10th the executive members of the Irish and UK EUPATI national platforms came together in Dublin to explore synergies, opportunities and common challenges for the two national platforms. A very successful workshop took place and both regions plan to continue working together around PPI in 2018.
The European Commission has launched Consensus Information on Biosimilars in 23 languages. It contains questions and answers on biosimilar medicines and is designed to serve as a reliable source of information for patients. You can find further information about work in this area by going here.
Health Research Board
The HRB produced this accessible document capturing ‘Health Research in Action’. It is a collection of discoveries and outputs from HRB-supported research.
COMET has produced this interesting three-minute video clip on Selecting Outcomes in Clinical Trials. Among other things, the video highlights the fact that people conducting clinical trials often do not consult with patients or even other researchers about what outcomes to focus on.
BBMRI-ERIC have published their 2018 work programme, and also this LinkedIn article by Director General Eric Steinfelder, which sets out the organisation’s vision for the coming year: to build and strengthen value-added, sustainable biobanking.