Poster presentations
During the conference, several posters will be presented. Below is a list of publications for which digital versions are available. This list will be updated over the coming days.
| Number |
Poster Title |
Authors |
| P02 |
Harmonizing Treatment and Improving Outcomes for Pediatric Adrenocortical Tumors: A Pan-European Prospective Clinical Trial by EXPeRT and ERN (, 854 KB) |
M. Kuhlen et al |
| P03 |
Machine Learning and Bayesian modeling of rare diseases (, 417 KB) |
G. Penagos |
| P05 |
Supplementing Published Evidence With Structured Observation of Cases from a Clinical Audit Registry: a Pilot (, 211 KB) |
W. Irvine el al |
| P08 |
Evaluation of the Fill-it-up-design to use historical control data in randomized clinical trials with two arm parallel group design (, 470 KB) |
S. Wied et al |
| P11 |
Defining the cutoff value of oligometastasis in head and neck squamous cell carcinoma (, 235 KB) |
D. Berzenji et al |
| P13 |
Clinicopathological determinants of recurrence risk in resected typical and atypical carcinoids (, 272 KB) |
G Lamberti et al |
| P16 |
Shaping the Future of Epilepsy Research in Europe: the ERN EpiCARE Priorities (, 1 MB) |
A. Arzimanoglou el al |
| P17 |
Evaluating the Performance of Pan Ran's nomogram for predicting recurrence in GIST: an analysis of the Italian population (, 617 KB) |
M. Grassi et al |
| P18 |
A phase II, multicentric, single-arm trial to evaluate Activity of Capecitabine and Temozolomide in neUroendocrine neoplAsms of the Lung – ACTUAL study (, 1 MB) |
E. Andrini el al |
| P22 |
Patient Perspective in the First German National Registry for Rare Diseases (Narse) Within the Fair4rare Evaluation Project (, 1 MB) |
C. Finis |
| P23 |
Patient-centered Perspective Insights from an ePAG Workshop (, 1 MB) |
I. Alves et al |
| P26 |
Defining priorities in the transition from paediatric to adult healthcare for rare bone disease patients: a dialogic approach (, 1 MB) |
D. Scognamiglio et al |
| P27 |
Utility of Polygenic Risk Score (PGS) for Prediction of Dilated Cardiomyopathy (DCM) and Modulation of Severity of LV Dysfunction Among Cases (, 676 KB) |
D. Kramarenko et al |
| P28 |
DeCODe: Develop Child and Orphan Device Support (, 152 KB) |
A. Jonker et al |
| P30 |
Efficacy of telerehabilitation with games in a patient with late-onset Pompe disease (, 152 KB) |
M. Bon et al |
| P32 |
An international, multidisciplinary research project aimed at evaluating the quality of life of children with visual impairment caused by Rare Eye Diseases (, 2 MB) |
K. Nowomiejska et al |
| P36 |
The Development of an Undiagnosed Respiratory Patient Pathway (UDPP) (, 23 MB) |
L. Rist et al |
| P40 |
Research Proposal: Role of the Clinical Research Coordinator within International Networks for Congenital Heart Disease (, 426 KB) |
L. Schianchi et al |
| P43 |
Prehabilitative Exercise During Pediatric Sarcoma Treatment: Protocol of a Feasibility Study (, 1 MB) |
J. Queisser et al |
| P46 |
Leveraging FAIR principles to enable collaborative data exploration and analysis by people and machines (, 4 MB) |
S. Louisse et al |
| P47 |
Multistakeholder Mapping of Endocrine
Medicine availability and shortages in Europe: ENDO-ERN expert centres (, 395 KB) |
J. de Graaf et al |
| P49 |
Collection and codification of patients without determined diagnosis in ERN registries (, 393 KB) |
C. Vossler-Wolf el al |
| P50 |
Randomization in clinical trials with small sample sizes using group sequential designs (, 450 KB) |
D. Bodden el al |