German Myasthenia gravis registry - research in treatment of patients with myasthenic syndromes in clinical practice

German Myasthenia gravis registry - research in treatment of patients with myasthenic syndromes in clinical practice - Mya-Reg

Status

Recruiting

Phases

Unknown

Study type

Observational

Source

DRKS

Registry ID

DRKS00024099

Enrollment

2000

Registered

2021-02-02

Start date

2019-02-04

Completion date

Unknown

Last updated

2025-04-07

For informational purposes only — not medical advice. Sourced from public registries and may not reflect the latest updates. Terms

Conditions

G70.0 G70.2 G73.1

Interventions

Group 1: patients with myasthenic syndromes (MG, LEMS, CMS)

Eligibility

Sex/Gender

All

Inclusion criteria

Inclusion criteria: - ability to give consent - diagnosis of MG, LEMS, CMS

Exclusion criteria

Exclusion criteria: Revocation of participation in the study

Design outcomes

Primary

Measure	Time frame
The primary goal is to improve the quality of care in terms of quality assurance. Relevant data for the treatment of myasthenia patients should be recorded and evaluated on the web. These data are to be used to research the care of patients with myasthenic syndromes and in particular to identify modifiable, previously unknown influencing factors on the long-term course in order to improve the treatment of the patients and thus also the long-term outcome of patients with myasthenia gravis (MG) To improve Lambert-Eaton Myasthenic Syndrome (LEMS) and Congenital Myasthenic Syndrome (CMS).	—

Measure

Time frame

The primary goal is to improve the quality of care in terms of quality assurance. Relevant data for the treatment of myasthenia patients should be recorded and evaluated on the web. These data are to be used to research the care of patients with myasthenic syndromes and in particular to identify modifiable, previously unknown influencing factors on the long-term course in order to improve the treatment of the patients and thus also the long-term outcome of patients with myasthenia gravis (MG) To improve Lambert-Eaton Myasthenic Syndrome (LEMS) and Congenital Myasthenic Syndrome (CMS).

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Secondary

Measure	Time frame
• Better understanding of the course of the disease (ocular, bulbar, generalized) • Better understanding of the sensitivity of diagnostic procedures: - Neurological examination [including MGFA (Myasthenia Gravis Foundation of America) - and QMG (Quantitative Myasthenia Gravis) score as well as examination of the extraocular muscles] - Electrophysiological examinations (positive results in electrophysiology - evidence of a decrement or increment of a clinically affected muscle) - Laboratory diagnostics (detection of MG or LEMS-specific auto-antibodies against nACh-R, MuSK, titin, LRG4, VGCC, SOX-1) - Pharmacological testing (pyridostigmine / edrophonium test) - Thymus diagnostics by means of imaging procedures [computed tomography (CT) with contrast agent (KM), magnetic resonance tomography (MRT), positron emission tomography (PET)] • Identification of the incidence and prevalence of comorbidities, in particular other autoimmune diseases and emotional comorbidities such as fatigue symptoms (questionnaires on quality of life, fatigue, depression, etc.) • Identification of risk factors for developing MG or LEMS • Better understanding of the long-term prognosis of the disease and the effectiveness and safety profile of therapeutic procedures: • Survey of the use of therapeutic procedures with regard to duration, occurrence of side effects and necessary monitoring examinations (eg differential blood count, liver and kidney values) both with regard to symptomatic therapies with pyridostigmine or 3,4-diaminopyridine, as well as for basic immunotherapies (cortisone, azathioprine , Mycophenolate mofetil, methotrexate / folic acid or ciclosporin) or the use of escalation therapies (eculizumab, rituximab or cyclophosphamide) • Survey of the implementation of exacerbation therapy using plasmapheresis / immunoadsorption or intravenous immunoglobulins • Survey of the performance of a thymectomy and related histology with, if necessary, subsequent radiation / chemotherapy • Influe	—

Measure

Time frame

• Better understanding of the course of the disease (ocular, bulbar, generalized) • Better understanding of the sensitivity of diagnostic procedures: - Neurological examination [including MGFA (Myasthenia Gravis Foundation of America) - and QMG (Quantitative Myasthenia Gravis) score as well as examination of the extraocular muscles] - Electrophysiological examinations (positive results in electrophysiology - evidence of a decrement or increment of a clinically affected muscle) - Laboratory diagnostics (detection of MG or LEMS-specific auto-antibodies against nACh-R, MuSK, titin, LRG4, VGCC, SOX-1) - Pharmacological testing (pyridostigmine / edrophonium test) - Thymus diagnostics by means of imaging procedures [computed tomography (CT) with contrast agent (KM), magnetic resonance tomography (MRT), positron emission tomography (PET)] • Identification of the incidence and prevalence of comorbidities, in particular other autoimmune diseases and emotional comorbidities such as fatigue symptoms (questionnaires on quality of life, fatigue, depression, etc.) • Identification of risk factors for developing MG or LEMS • Better understanding of the long-term prognosis of the disease and the effectiveness and safety profile of therapeutic procedures: • Survey of the use of therapeutic procedures with regard to duration, occurrence of side effects and necessary monitoring examinations (eg differential blood count, liver and kidney values) both with regard to symptomatic therapies with pyridostigmine or 3,4-diaminopyridine, as well as for basic immunotherapies (cortisone, azathioprine , Mycophenolate mofetil, methotrexate / folic acid or ciclosporin) or the use of escalation therapies (eculizumab, rituximab or cyclophosphamide) • Survey of the implementation of exacerbation therapy using plasmapheresis / immunoadsorption or intravenous immunoglobulins • Survey of the performance of a thymectomy and related histology with, if necessary, subsequent radiation / chemotherapy • Influe

—

Countries

Germany

Contacts

Public ContactFrauke Stascheit

Charité- Universitätsmedizin BerlinKlinik für Neurologie mit experimenteller Neurologieintegriertes zertifiziertes Myasthenie-Zentrum

frauke.stascheit@charite.de+4930450639724

Outcome results

None listed

Source: DRKS (via WHO ICTRP) · Data processed: Jul 7, 2026