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

Not Applicable

• Conditions: eurological intractable diseases

• Registration Number: JPRN-UMIN000022167
• Lead Sponsor: Gifu Pharmaceutical University Laboratory of Medical Therapeutics and Molecular Therapeutics

Brief Summary

We made clear wrong recognition of the patients and their families due to lack of information on the diseases, uneasiness and agony accompanied with the progress of the diseases, and altered consciousness led by suffering from the disease. In addition, the questions for the experts and the requests for the medical system became clear. We also recognized the need for the adequate genetic counseling system and the psychological support again.

Detailed Description

Not available

Study Timeline

• Results First Posted: 1900-01-01
• Study Start: 2016-05-10
• Study Completion: 2022-08-31
• Last Update Posted: 17 October 2023

Recruitment & Eligibility

• Status: Complete: follow-up complete
• Sex: All
• Target Recruitment: 50

Inclusion Criteria

Not provided

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.

Study & Design

• Study Type: Observational
• Study Design: Not specified