Once a year the NCER-PD research programme is evaluated by an external Steering Committee composed of international experts. On 10-11 July 2017, the two-year progress report of the study was presented and received very good grades.
Being updated about the three core projects of the NCER-PD initiative, the Steering Committee concluded that the progress on all projects is very positive and that the programme’s implementation after 2 years is well on track. In particular the degree of patient involvement and outreach is exemplary and the large number of collaborations with groups within the EU and beyond testifies the increased international visibility.
“The committee is very impressed by the progress of the programme. With the Luxembourg Parkinson’s Study they have created a cornerstone for Parkinson’s research in Luxembourg”, the evaluation report states. The experts are positive that this will form the basis to attract pharmaceutical companies with their clinical trials to Luxembourg in the future.
The Steering Committee further recommends retaining the focus on characterising patients deeply and over time in order to get a detailed description of the course of the disease and to better be able to divide patients into subgroups. Therefore, it is essential that participants of the study return for their annual follow up visit.
Although outreach activities were done very successfully, incorporation of the whole PD community shall be continued to ensure sustained referral of patients to expand the cohort. Overall the study needs to reach its aim of 800 patients and 800 control subjects within the next two years.
“We are very happy with the good evaluation results. They recognize the strong efforts of the entire team to make this research programme a success,” says Prof. Rudi Balling, NCER-PD coordinator. “We still have many things to do to reach our goals. But with the invaluable help of our participants we are on the right track to find new ways to diagnose the disease earlier and treat the disease better.”
Steering Committee members:
Dr Yves Fromes, Chair, Scientific Council of the FNR
Prof Rolf Abweiler, Director of EMBL-EBI
Prof Roger Barker, University of Cambridge
Prof Gerd Kempermann, DZNE Dresden and Center for Regenerative Therapies CRTD, TU Dresden
Prof Edda Klipp, Humboldt University Berlin
Prof Warren Olanow, Mount Sinai School of Medicine, New York