POEMS Registry for Optimizing Management, Improving Support, and Enhancing care

POEMS (Crow/Fukase) Syndrome Registry (Japan Neuroimmune disease registry) - POEMS syndrome registry

Status

Recruiting

Phases

Unknown

Study type

Observational

Source

JPRN

Registry ID

JPRN-UMIN000056377

Enrollment

100

Registered

2025-02-01

Start date

2025-03-01

Completion date

Unknown

Last updated

2026-06-29

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

Conditions

Neuroimmune Disease (POEMS(Crow/Fukase) syndrome)

Interventions

None listed

Eligibility

Sex/Gender

All

Inclusion criteria

Inclusion criteria: 1. Patients with POEMS syndrome who meet probable or higher in the following diagnostic criteria Major Criteria (1)Multiple polyneuropathy (2)Monoclonal plasma cell proliferation (proven by serum or urine M-protein positivity (immunofixation), bone marrow examination, etc.) (3)Elevated serum VEGF (above 1000 pg/ml) Sub criteria (4)Osteosclerotic lesions (5)Castleman's disease (6)Organ enlargement (lymph nodes, liver, spleen) (7)One or more of edema, pleural effusion, ascites, or cardiac effusion (8)Endocrine abnormalities* (adrenal, thyroid, pituitary, gonad, parathyroid, diabetes) (9)Skin abnormalities (pigmentation, bristle, hemangioma, cyanosis, canities unguium) (10)Papillary edema (11)Platelet hyperplasia *Note that thyroid function abnormalities and diabetes mellitus are not included in the sub-criteria because of their high prevalence. Definite: 3 of the major criteria and at least 1 of the sub criteria are met. Probable: fulfillment of major criteria (1) and (3) and at least one of the sub criteria 2. Patients who have given written consent to participate in the study

Exclusion criteria

Exclusion criteria: 1. Patients deemed inappropriate for inclusion by the investigator.

Design outcomes

Primary

Measure	Time frame
The course of clinical endpoints mainly used for each neuroimmune disease.	—

Secondary

Measure	Time frame
1. Neurological findings (ONLS, grip strength, MRC sun score, Performance Status) 2. EQ-5D-5L survey 3. Adverse events 4. Blood examination (VEGF) 5. Monoclonal plasma cell proliferation (proved by serum or urine M protein positivity (immunofixation), bone marrow examination, etc.)	—

Countries

Japan

Contacts

Public ContactTomoki Suichi

National University Corporation Chiba University Hospital Special Assistant Professor, Department of Neurology

t-suichi@plum.ocn.ne.jp0432227171

Outcome results