Status:

RECRUITING

Natural History Study for Patients With Nemaline Myopathy in Spain

Lead Sponsor:

Hospital Universitari Vall d'Hebron Research Institute

Conditions:

Nemaline Myopathy

Myopathies

Eligibility:

All Genders

Brief Summary

The objective of this natural history study is to comprehensively characterize the disease progression and clinical features of nemaline myopathies. The study aims to establish a well-defined cohort o...

Detailed Description

The aims of the study are: * Identify the specific genes and mutations responsible for NM in Spain. * Define the in-depth phenotyping of NM and the phenotype-genotype relationship. * Characterize the...

Eligibility Criteria

Inclusion Criteria:

  • Patients with a confirmed clinical and genetic diagnosis of MN (mutations in ACTA1, NEB, TPM2, TPM3, KBTBD13, CFL2, KLHL40, KLHL41, LMOD3, MYPN, TNNT1, TNNT3), or under discussion if they only have a compatible biopsy.
  • Signed informed consent by the patient or Legal Authority Responsible, and/or assent by the subject (in pediatric population).

Key Trial Info

Start Date :

June 1 2026

Trial Type :

OBSERVATIONAL

Allocation :

ESTIMATED

End Date :

June 1 2032

Estimated Enrollment :

100 Patients enrolled

Trial Details

Trial ID

NCT07488806

Start Date

June 1 2026

End Date

June 1 2032

Last Update

March 23 2026

Active Locations (1)

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Page 1 of 1 (1 locations)

1

University Hospital Vall d'Hebron

Barcelona, Spain, 08035