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Natural history study of Duchenne muscular dystrophy focusing on upper limb motor function

Natural history study of Duchenne muscular dystrophy focusing on upper limb motor function - Natural history study of Duchenne muscular dystrophy

Status
Active, not recruiting
Phases
Unknown
Study type
Observational
Source
JPRN
Registry ID
JPRN-UMIN000046838
Enrollment
100
Registered
2022-02-07
Start date
2022-08-01
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

Duchenne muscular dystrophy

Interventions

None listed

Sponsors

National Center of Neurology and Psychiatry
Lead Sponsor
Osaka Toneyama Medical Center, Higashisaitama National Hospital, Matsumoto Medical Center, National Hospital Organization Suzuka National Hospital, National Hospital Organization Shimoshizu National Hospital, National Hospital Organization Akita Hospital, National Hospital Organization Hakone National Hospital, National Hospital Organization Nagara Medical Center, Nara Medical University Hospital, Nagano Children&#39
Collaborator
s Hospital, Nagasaki University Hospital, NHO Iou National Hospital
Collaborator

Eligibility

Sex/Gender
Male

Inclusion criteria

Inclusion criteria: 1. A dystrophin abnormality has been proved by dystrophin genetic test or myopathology, and a definitive diagnosis of DMD has been made. 2. Upper limb motor dysfunction classification at baseline 2007 grade 12 or lower 3. If you are taking steroids, start using them at least 6 months before baseline, and within 3 months, the dosage and administration of steroids will not change and the symptoms will be stable. 4. If you have participated in clinical trials / clinical trials, more than 6 months have passed since the end of study / investigational drug administration at baseline.

Exclusion criteria

Exclusion criteria: 1. The principal investigator or the research coordinator determined that he / she had behavioral abnormalities such as intellectual disability, autistic tendency, and attention deficit hyperactivity disorder that interfered with the implementation of motor function evaluation. 2. Severe heart failure or respiratory failure makes it difficult to visit an outpatient clinic 3. In addition, the principal investigator or the research coordinator judged that it was inappropriate as the subject of this research. 4. Participating in clinical trials / clinical trials at baseline

Design outcomes

Primary

MeasureTime frame
We will perform a multifaceted evaluation of upper limb function obtained from natural history.

Secondary

MeasureTime frame
We will Evaluate ADL, QOL, and swallowing function.

Countries

Japan

Contacts

Public ContactTakatoshi Hara

National Center of Neurology and Psychiatry Department of Rehabilitation Medicine

t_hara1019@ncnp.go.jp042-341-2711

Outcome results

None listed

Source: JPRN (via WHO ICTRP) · Data processed: Jul 3, 2026