UMIN-CTR Clinical Trial
| Unique ID issued by UMIN | UMIN000060728 |
|---|---|
| Receipt number | R000069401 |
| Scientific Title | The impact of participation of patients in the Local Council on Measures for Intractable Diseases on the support systems for patients with intractable diseases. |
| Date of disclosure of the study information | 2026/03/01 |
| Last modified on | 2026/02/21 23:54:43 |
* This page includes information on clinical trials registered in UMIN clinical trial registed system.
* We don't aim to advertise certain products or treatments
Basic information
Public title
The relationship between participation of patients in the Intractable Diseases Council and the the support systems for patients with intractable diseases.
Acronym
The relationship between participation of patients in the Intractable Diseases Council and the the support systems for patients with intractable diseases.
Scientific Title
The impact of participation of patients in the Local Council on Measures for Intractable Diseases on the support systems for patients with intractable diseases.
Scientific Title:Acronym
The impact of participation of patients in the Local Council on Measures for Intractable Diseases on the support systems for patients with intractable diseases.
Region
| Japan |
Condition
Condition
Intractable diseases
Classification by specialty
| Neurology | Nursing |
Classification by malignancy
Others
Genomic information
NO
Objectives
Narrative objectives1
This study aims to clarify whether participation by patients with intractable diseases in the Local Council on Measures for Intractable Diseases and sharing of their needs with relevant organs will promote cooperation among relevant organs and influence the support systems for patients with intractable diseases based on the needs of patients.
This study clarifies the relationship between the participation of patients with intractable diseases in councils and the support systems for patients with intractable diseases, and to help revitalize the councils.
Basic objectives2
Others
Basic objectives -Others
This study clarifies the relationship between the participation of patients with intractable diseases in the Local Council on Measures for Intractable Diseases and the support systems for patients with intractable diseases.
Trial characteristics_1
Trial characteristics_2
Developmental phase
Assessment
Primary outcomes
1.A measure to quantify the quality of communication and cooperation among medical, nursing, and welfare services in a region.(26 items)(Abe,Morita.2014)
2.The support systems for patients with intractable diseases. (6items)
Key secondary outcomes
1. Establishment and operational structure. (4items)
2. Methods for identifying the needs of patients with intractable diseases. (7 items)
3. Implementation status of the Local Council on Measures for Intractable Diseases. (6 items)
4. Participation by patients with intractable diseases. (11 items)
Base
Study type
Observational
Study design
Basic design
Randomization
Randomization unit
Blinding
Control
Stratification
Dynamic allocation
Institution consideration
Blocking
Concealment
Intervention
No. of arms
Purpose of intervention
Type of intervention
Interventions/Control_1
Interventions/Control_2
Interventions/Control_3
Interventions/Control_4
Interventions/Control_5
Interventions/Control_6
Interventions/Control_7
Interventions/Control_8
Interventions/Control_9
Interventions/Control_10
Eligibility
Age-lower limit
| Not applicable |
Age-upper limit
| Not applicable |
Gender
Male and Female
Key inclusion criteria
Public health nurses in the intractable diseases assigned department of a prefectural government, cities establishing a health center, and special wards in 461 locations nationwide.
Key exclusion criteria
1.Administrative staff at public health centers.
2.Public health nurses other than those in the public health center's intractable diseases assigned department.
Target sample size
461
Research contact person
Name of lead principal investigator
| 1st name | Shinobu |
| Middle name | |
| Last name | Yamaguchi |
Organization
Graduate School Ibaraki Prefectural University of Health Sciences
Division name
Graduate School of Health Sciences
Zip code
300-0394
Address
4669-2 Ami,Ami-Machi,Inashiki-gun,Ibaraki Prefectural
TEL
029-888-4000
yamaguchis@ipu.ac.jp
Public contact
Name of contact person
| 1st name | Reiko |
| Middle name | |
| Last name | Saito |
Organization
Graduate School Ibaraki Prefectural University of Health Sciences
Division name
Graduate School of Health Sciences
Zip code
300-0394
Address
4669-2 Ami,Ami-Machi,Inashiki-gun,Ibaraki Prefectural
TEL
029-888-4000
Homepage URL
saitore@ipu.ac.jp
Sponsor or person
Institute
Ibaraki Prefectural University of Health Sciences
Institute
Department
Personal name
Funding Source
Organization
Ibaraki Prefectural University of Health Sciences
Organization
Division
Category of Funding Organization
Local Government
Nationality of Funding Organization
Other related organizations
Co-sponsor
Name of secondary funder(s)
IRB Contact (For public release)
Organization
Ibaraki Prefectural University of Health Sciences
Address
4669-2 Ami,Ami-Machi,Inashiki-gun,Ibaraki Prefectural
Tel
029-888-4000
webmaster@ipu.ac.jp
Secondary IDs
Secondary IDs
NO
Study ID_1
Org. issuing International ID_1
Study ID_2
Org. issuing International ID_2
IND to MHLW
Institutions
Institutions
Other administrative information
Date of disclosure of the study information
| 2026 | Year | 03 | Month | 01 | Day |
Related information
URL releasing protocol
Publication of results
Unpublished
Result
URL related to results and publications
Number of participants that the trial has enrolled
Results
Results date posted
Results Delayed
Results Delay Reason
Date of the first journal publication of results
Baseline Characteristics
Participant flow
Adverse events
Outcome measures
Plan to share IPD
IPD sharing Plan description
Progress
Recruitment status
Preinitiation
Date of protocol fixation
| 2026 | Year | 02 | Month | 24 | Day |
Date of IRB
Anticipated trial start date
| 2026 | Year | 06 | Month | 01 | Day |
Last follow-up date
| 2027 | Year | 03 | Month | 31 | Day |
Date of closure to data entry
Date trial data considered complete
Date analysis concluded
Other
Other related information
This study is a non-invasive observational study.
Management information
Registered date
| 2026 | Year | 02 | Month | 21 | Day |
Last modified on
| 2026 | Year | 02 | Month | 21 | Day |
Link to view the page
Value
https://center6.umin.ac.jp/cgi-open-bin/ctr_e/ctr_view.cgi?recptno=R000069401
