Patient Registry / Projects

3rd Health Programme (2014-2020)
The ERN-RND Rare Neurological Disease Registry [ERN-RND Registry]
The ERN-RND Registry project aims to establish a demographic platform for collection of relevant core patient information. This will be accomplished by the construction and implementation of a single ...
The ERN-RND Registry project aims to establish a demographic platform for collection of relevant core patient information. This will be accomplished by the construction and implementation of a single data base encompassing all rare neurological diseases in pediatric and adult patients (the ERN-RND Registry), which will collect information according to the "Set of common data elements for Rare Diseases Registration". The members of ERN-RND provide healthcare to more than 35,000 patients with rare neurological diseases. The proposed ERN-RND Registry will target patients, who suffer from the following rare neurological diseases and conditions: Ataxia and HSP, Leukodystrophies, Frontotemporal Dementia, Dystonia, Paroxysmal Disorders & NBIA, Atypical Parkinsonism and Huntington’s Disease & Choreas. The ERN-RND registry project will pursue three main objectives: 1. The ERN-RND core Registry will be developed using the RedCap database platform that is being operated at University Hospital Tübingen, Hertie Institute for Clinical Brain Research. 2. The second main objective of the project will be to link the central ERN-RND registry with existing hospital databases and disease- or treatment-specific registries. 3. The third objective is the implementation of a continuous monitoring system to follow center performance in terms of care quality and patient outcomes.
Start date: 01/04/2020 - End date: 31/03/2023

Call: Call for Proposals for Projects 2019
Topic: Patient Registry
3rd Health Programme (2014-2020)
ERN eUROGEN Registry for rare urogenital diseases [ERN-eUROGEN registry]
The ERN eUROGEN, currently consisting of 43 HCPs from 17 EU Members States, aims to set up a large patient registry collecting individual data from patients suffering from rare urogenital diseases or ...
The ERN eUROGEN, currently consisting of 43 HCPs from 17 EU Members States, aims to set up a large patient registry collecting individual data from patients suffering from rare urogenital diseases or complex conditions. Currently, very limited data is being gathered about disease progression, surgical procedures and treatment outcome, and the few existing databases are not standardized, fragmenting and scattering the information. Moreover, there is a lack of long-term follow up of the treatment outcome into adolescence and adulthood, which hinders improvement of treatments over time.

Here, ERN eUROGEN will launch the core registry containing the 16 JRC core elements plus several urogenital specific data elements. Together, they will conform the pilot phase of the registry where physicians from all 43 HCPs will register their last 30 rare cases in an anonymous way. The pilot phase will allow to get used to the registry and to perform a clinical snapshot of the current practices i.e. to compare the clinical management of these cases among the expert centres across Europe.

Besides, we will start to integrate four existing rare urogenital disease-specific registries into eUROGEN registry by assessing interoperability and data elements to be imported. We will also prepare the next expansion phase of the registry by collecting the informed consent forms of patients, incorporating suggestions of the users from the pilot phase and enlarging the data set of the eUROGEN registry. Thus, the main outputs will be the operational registry, its governance and the expansion plan, the synchronization protocol, the practice variation study and patient cohorts for future research and clinical trials.

The eUROGEN registry for all 114 rare urogenital diseases will benefit patients and their families who go through a diagnosis odyssey, and the physicians who will learn about seldom conditions and get new insights into the best treatment options, impossible on a national scale.
Start date: 01/06/2020 - End date: 31/05/2023

Call: Call for Proposals for Projects 2019
Topic: Patient Registry