CC BY-NC-ND 4.0 · Neurology International Open 2018; 02(01): E25-E39
DOI: 10.1055/s-0043-108830
Review
Eigentümer und Copyright ©Georg Thieme Verlag KG 2018

Neuroimmunological Registries in Germany

S. Thiel
1  Neurologische Klinik, St. Josef Hospital, Ruhr-Universität Bochum
,
F. Leypoldt
2  Bereich Neuroimmunologie, Institut für Klinische Chemie, Universitätsklinikum Schleswig-Holstein Kiel/Lübeck
3  Klinik für Neurologie, Universitätsklinikum Schleswig-Holstein Kiel
,
L. Röpke
4  Klinik für Neurologie, Universitätsklinikum Jena
,
K. P. Wandinger
2  Bereich Neuroimmunologie, Institut für Klinische Chemie, Universitätsklinikum Schleswig-Holstein Kiel/Lübeck
5  Klinik für Neurologie, Universitätsklinikum Schleswig-Holstein Lübeck
,
T. Kümpfel
6  Institut für klinische Neuroimmunologie, Ludwig-Maximilians-Universität, München
,
O. Aktas
7  Klinik für Neurologie, Medizinische Fakultät, Heinrich-Heine-Universität Düsseldorf
,
O. von Bismarck
1  Neurologische Klinik, St. Josef Hospital, Ruhr-Universität Bochum
,
A. Salmen
1  Neurologische Klinik, St. Josef Hospital, Ruhr-Universität Bochum
8  Universitätsklinik für Neurologie, Inselspital, Universitätsspital Bern, Universität Bern, Schweiz
,
B. Ambrosius
1  Neurologische Klinik, St. Josef Hospital, Ruhr-Universität Bochum
,
G. Ellrichmann
1  Neurologische Klinik, St. Josef Hospital, Ruhr-Universität Bochum
,
G. Antony
9  Central Information Office (CIO KNP), Universität Marburg
,
T. Dankowski
10  Institut für Medizinische Biometrie und Statistik, Universität zu Lübeck, Universitätsklinikum Schleswig-Holstein, Campus Lübeck, Lübeck
,
A. Ziegler
10  Institut für Medizinische Biometrie und Statistik, Universität zu Lübeck, Universitätsklinikum Schleswig-Holstein, Campus Lübeck, Lübeck
11  ZKS Lübeck, Universität zu Lübeck, Lübeck
12  School of Mathematics, Statistics and Computer Science, University of KwaZulu-Natal, Pietermaritzburg, South Africa
,
A. Stahmann
13  MS Forschungs- und Projektentwicklungs-gGmbH, Hannover
,
C. Meyer
13  MS Forschungs- und Projektentwicklungs-gGmbH, Hannover
,
K. Eichstädt
13  MS Forschungs- und Projektentwicklungs-gGmbH, Hannover
,
K. Buckow
14  Institut für Medizinische Informatik, Universitätsmedizin Göttingen
,
T. Meißner
14  Institut für Medizinische Informatik, Universitätsmedizin Göttingen
,
J. Thibaut
15  Institut für Epidemiologie und Sozialmedizin, Westfälische Wilhelms-Universität Münster
,
L. Khil
15  Institut für Epidemiologie und Sozialmedizin, Westfälische Wilhelms-Universität Münster
,
K. Berger
15  Institut für Epidemiologie und Sozialmedizin, Westfälische Wilhelms-Universität Münster
,
R. Gold
1  Neurologische Klinik, St. Josef Hospital, Ruhr-Universität Bochum
,
K. Hellwig
1  Neurologische Klinik, St. Josef Hospital, Ruhr-Universität Bochum
› Author Affiliations
Further Information

Publication History

Publication Date:
08 January 2018 (online)

Abstract

Several neuroimmunological registries have been established in Germany during the last 10 years. The common aim is to investigate the course of different diseases, mainly under various therapeutic conditions, to identify predictive factors as well as the side effects of immunomodulating therapies. Six nationwide neuroimmunological registries will be presented in this article. The German Network for Research on Autoimmune Encephalitis (GENERATE) with more than 40 participating clinical centers and 570 documented patients (September 2016) collects data and biomaterials of autoimmune encephalitis with known and unknown antibodies. The registry coordinates and mediates between scientists and clinicians and acts as a platform for the development of guidelines and procedures. The neuromyelitis optica study group (NEMOS) has established a national registry for patients with neuromyelitis optica and neuromyelitis optica spectrum disorders. In addition to 22 academic hospitals, 17 regional hospitals and several practices are participating. Currently, 250 patients are enrolled. Moreover, NEMOS is now establishing a prospective patient cohort (NationNMO) within the competence network multiple sclerosis. Current research focuses on treatment strategies for relapses and interval therapy of neuromyelitis optica. The competence network multiple sclerosis has initiated a multi-center, prospective cohort study of patients with clinically isolated syndrome (CIS) or relapsing-remitting multiple sclerosis (MS) (NationMS), with the aim of long-term follow-up and clinical and paraclinical characterization of the patients. Between August 2010 and December 2014, 1,212 patients in 22 university und non-university centers were enrolled in the NationMS cohort. Standardized clinical data as well as biomaterial and MRI images were collected and stored. The German MS Society (DMSG, Bundesverband e.V.) established in 2001 a long-term project to obtain a consistent and reliable overview of MS patients in Germany. Since 2014 the registry has been revised comprehensively, with the main purpose of establishing a permanent data repository for healthcare research while ensuring the collection, storage and provision of data over decades and enabling the description of long-term outcomes. Currently, more than 170 German centers are participating and over 48,000 patients are enrolled in the registry. Since 2013, the competence network multiple sclerosis has established the immunotherapy registry REGIMS with the objective to obtain information on incidence, type and characteristics of adverse events of new immunomodulating therapies for patients with multiple sclerosis or clinical isolated syndrome. As of January 2017 more than 700 patients have been recruited from 36 active centers. The German Multiple Sclerosis and Pregnancy Registry aims to obtain safety information of disease modifying drug exposure during pregnancy. In addition to safety aspects, disease course during pregnancy and postpartum and the identification of predictors of disease activity are investigated. During the last ten years 1,500 pregnant MS patients were prospectively enrolled in the registry and at least 250 new pregnancies are followed every year. These six registries make an important epidemiological and scientific contribution. Numerous colleagues from clinics and practice support these registries. The objective is the closer understanding of the disease course, the influence of therapeutic decisions and thus the improvement of counseling and care.