Qualitative study to make use of the narrative of patients with neurological intractable diseases and their families for better medical care

Qualitative study to make use of the narrative of patients with neurological intractable diseases and their families for better medical care - Qualitative study on narrative of patients

Status

Active, not recruiting

Phases

Unknown

Study type

Observational

Source

JPRN

Registry ID

JPRN-UMIN000022167

Enrollment

Registered

2016-05-10

Start date

2012-12-01

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

Neurological intractable diseases

Interventions

None listed

Eligibility

Sex/Gender

All

Inclusion criteria

Inclusion criteria: It is based on the diagnostic criteria of each disease. # Idiopathic basal ganglia calcification (IBGC) # Amyotrophic lateral sclerosis (ALS) # Other rare neurological intractable diseases

Exclusion criteria

Exclusion criteria: For IBGC, we exclude diseases which show calcification, because of some causes such as hypoparathyroism, pseudohypoparathyroism, pseudopseudohypoparathyroism (Albright' s osteodystrophy), Down syndrome, collagen diseases, angiitis, infections, intoxication, trauma, radiation therapy and so on.

Design outcomes

Primary

Measure	Time frame
The problems that the patients with the neurological intractable diseases and their families have in their minds become more clear than before.	—

Secondary

Measure	Time frame
The specificity of each neurological intractable disease becomes clear by comparing it among the other neurologic intractable diseases.	—

Countries

Japan,Asia(except Japan)

Contacts

Public ContactIsao Hozumi

Gifu Pharmaceutical University Laboratory of Medical Therapeutics and Molecular Therapeutics

hozumi@gifu-pu.ac.jp058-230-8121

Outcome results