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<p>This study describes the development of Latvia’s first myasthenia gravis (MG) patient registry in a single-centre setting. Adults with confirmed MG were recruited between January 2022 and May 2025 at Pauls Stradiņš Clinical University Hospital. Demographic and clinical data were collected, and patients were assessed using the MGFA Clinical Classification, MG Composite (MGC), MG-ADL, MGQOL15, and Fatigue Severity Scale (FSS). Data were stored in a secure digital registry. A total of 112 patients were enrolled (62/107 (55%) female, from the available data; mean age 57.2&#xa0;years), with 523 visits recorded. Median disease duration was 4.5&#xa0;years. Antibody profiles were 76% AChR, 4% anti-MuSK, and 6% seronegative, with 14% missing data. At baseline, 25% of patients were in remission; after a median follow-up of 1.3&#xa0;years (IQR 0.8–1.9&#xa0;years), remission increased to 34%, while MGFA classes III–IV declined from 19 to 2%. Median MGC, MG-ADL, and MGQOL15 scores improved significantly (<i>p</i> &lt; 0.001). FSS improved modestly (45.5 → 42.0, <i>p</i> = 0.049), 50% reported relevant fatigue. Median prednisone dose decreased from 15.0 to 7.5&#xa0;mg (<i>p</i> &lt; 0.001). The registry demonstrates the feasibility of structured longitudinal data collection in MG, with clinical improvement observed during follow-up, although fatigue remains a persistent burden.</p>

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Development of the first myasthenia gravis patient registry in Latvia: a single-centre experience

  • 期刊论文

  • 出版模式：

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  • 发表日期：

    2026年5月30日

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  • Arta Grosmane-Bataraga,
  • Vladimirs Krutovs,
  • Marija Roddate,
  • Violeta Žukova,
  • Gundega Ķauķe,
  • Ieva Glāzere,
  • Linda Gailīte,
  • Nataļja Kurjāne,
  • Viktorija Ķēniņa

摘要

This study describes the development of Latvia’s first myasthenia gravis (MG) patient registry in a single-centre setting. Adults with confirmed MG were recruited between January 2022 and May 2025 at Pauls Stradiņš Clinical University Hospital. Demographic and clinical data were collected, and patients were assessed using the MGFA Clinical Classification, MG Composite (MGC), MG-ADL, MGQOL15, and Fatigue Severity Scale (FSS). Data were stored in a secure digital registry. A total of 112 patients were enrolled (62/107 (55%) female, from the available data; mean age 57.2 years), with 523 visits recorded. Median disease duration was 4.5 years. Antibody profiles were 76% AChR, 4% anti-MuSK, and 6% seronegative, with 14% missing data. At baseline, 25% of patients were in remission; after a median follow-up of 1.3 years (IQR 0.8–1.9 years), remission increased to 34%, while MGFA classes III–IV declined from 19 to 2%. Median MGC, MG-ADL, and MGQOL15 scores improved significantly (p < 0.001). FSS improved modestly (45.5 → 42.0, p = 0.049), 50% reported relevant fatigue. Median prednisone dose decreased from 15.0 to 7.5 mg (p < 0.001). The registry demonstrates the feasibility of structured longitudinal data collection in MG, with clinical improvement observed during follow-up, although fatigue remains a persistent burden.