The NCER-PD summer party took place on July 6 in Belval, providing an opportunity for Parkinson’s patients and their families to get together in a relaxed and carefree setting and celebrate their battle against the disease.
The event, which is now at its second edition, is organised by the Luxembourg Centre for Systems Biomedicine (LCSB) as part of the NCER-PD (National Centre for Excellence in Parkinson’s Disease) study. The half-day celebration featured introductory speeches by Prof. Rejko Krueger (LCSB) – the principle investigator of the study – followed by laboratory visits, ‘dancing’ sessions and various information stands. These included the LCSB’s, the Luxembourg Institute of Health (LIH)’s Clinical and Epidemiological Investigation Center (CIEC)’s, IBBL’s and Parkinson Research Clinic’s. The latter held a demonstration of eGaIT, a research collaboration project between ASTRUM IT, Erlangen University Hospital and Friedrich-Alexander University, which developed an innovative wearable device consisting of a pair of sneakers with sensors connected to a tablet with a specific software, providing researchers and clinicians with data on patients’ gaits. The lively ambiance was ensured by musical interludes from live bands and a steady supply of sweet treats.
IBBL’s stand was equipped with several demonstration collection kits, brochures, tubes and a slideshow, depicting in a straight-forward, tangible and visible way the flow of samples, from collection, to processing, to storage and subsequent redistribution. Patients showed a particular interest in grasping the process behind the collection of their specimen, and got the opportunity to understand the various steps involved in setting up the NCER-PD sample collection.
“Because the success of studies such as NCER-PD relies on the voluntary participation of both healthy donors and patients, it is crucial that they understand exactly what happens to their samples once they have been collected. Transparency is essential in this respect, since it gives both current and prospective participants confidence and peace of mind, knowing that their donations will contribute to advancing Parkinson’s research”, comments Estelle Sandt, project manager of the NCER-PD study at IBBL. “It is for this reason that events like the NCER-PD summer party are so important: not only do they support and strengthen donor recruitment, but they also provide the occasion for patients to take their minds off their conditions and celebrate their incredible efforts and achievements”, she adds.
NCER-PD is a joint research programme between major biomedical research partners in Luxembourg, namely the LCSB, the Centre Hospitalier de Luxembourg (CHL), IBBL, LIH and the Fonds National de la Recherche (FNR). The study aims to establish an open-end collection of biomaterials and associated data from patients and controls for neurodegenerative disease research. Such samples and data will be used in future research projects to find new ways for the earlier diagnosis and better treatment of Parkinson’s disease (PD).
For more information on NCER-PD, please visit the dedicated webpage.