UMIN-ICDS Clinical Trial
| Unique ID issued by UMIN | UMIN000061638 |
|---|---|
| Receipt number | R000070526 |
| Scientific Title | Experiences of families raising children with epidermolysis bullosa: a scoping review |
| Date of disclosure of the study information | 2026/05/20 |
| Last modified on | 2026/05/20 11:39:58 |
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Basic information
Public title
Experiences of families raising children with epidermolysis bullosa: a scoping review
Acronym
Experiences of families raising children with epidermolysis bullosa: a scoping review
Scientific Title
Experiences of families raising children with epidermolysis bullosa: a scoping review
Scientific Title:Acronym
Experiences of families raising children with epidermolysis bullosa: a scoping review
Region
| Japan |
Condition
Condition
Epidermolysis Bullosa
Classification by specialty
| Pediatrics | Dermatology | Nursing |
| Child |
Classification by malignancy
Others
Genomic information
NO
Objectives
Narrative objectives1
The objective of this scoping review is to synthesize domestic and international evidence regarding the parenting and caregiving experiences of families raising children with epidermolysis bullosa, and to derive implications for future support.
Basic objectives2
Safety
Basic objectives -Others
Trial characteristics_1
Trial characteristics_2
Developmental phase
Assessment
Primary outcomes
Synthesis of domestic and international evidence on the parenting and caregiving experiences of families raising children with epidermolysis bullosa
Key secondary outcomes
Base
Study type
Others,meta-analysis etc
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
Studies investigating the experiences and perceptions of families raising children diagnosed with epidermolysis bullosa (regardless of disease subtype).
Key exclusion criteria
Studies focused exclusively on end-of-life care.
Studies reporting solely from the perspective of healthcare professionals without incorporating the family's perspective.
Target sample size
Research contact person
Name of lead principal investigator
| 1st name | Keita |
| Middle name | |
| Last name | Sasaki |
Organization
Faculty of Health Sciences, Hokkaido University
Division name
Comprehensive Developmental Nursing
Zip code
060-0812
Address
Kita 12, Nishi 5, Kita-ku, Sapporo, Hokkaido, Japan
TEL
0117064915
k_sasaki@hs.hokudai.ac.jp
Public contact
Name of contact person
| 1st name | Keita |
| Middle name | |
| Last name | Sasaki |
Organization
Faculty of Health Sciences, Hokkaido University
Division name
Comprehensive Developmental Nursing
Zip code
060-0812
Address
Kita 12, Nishi 5, Kita-ku, Sapporo, Hokkaido, Japan
TEL
0117064915
Homepage URL
k_sasaki@hs.hokudai.ac.jp
Sponsor or person
Institute
Hokkaido University
Institute
Department
Personal name
Keita Sasaki
Funding Source
Organization
Hokkaido University
Organization
Division
Category of Funding Organization
Other
Nationality of Funding Organization
Japan
Other related organizations
Co-sponsor
Name of secondary funder(s)
IRB Contact (For public release)
Organization
Faculty of Health Sciences, Hokkaido University
Address
Kita 12, Nishi 5, Kita-ku, Sapporo, Hokkaido, Japan
Tel
0117064915
k_sasaki@hs.hokudai.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
北海道
Institutions
Institutions
Other administrative information
Date of disclosure of the study information
| 2026 | Year | 05 | Month | 20 | 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
16
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
No longer recruiting
Date of protocol fixation
| 2026 | Year | 05 | Month | 20 | Day |
Date of IRB
| 2026 | Year | 05 | Month | 20 | Day |
Anticipated trial start date
| 2026 | Year | 05 | Month | 20 | 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 will conduct a scoping review based on the five-stage framework proposed by Arksey and O'Malley (2005): 1) identifying the research question, 2) identifying relevant studies, 3) study selection, 4) charting the data, and 5) collating, summarizing, and reporting the results. The final review will be reported in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR) guidelines (Tricco et al., 2018).A comprehensive literature search will be performed using the following databases: Ichushi-Web, PubMed, CINAHL, CiNii, and MEDLINE. The search strategy will combine controlled vocabulary (such as MeSH and thesaurus terms) and free-text keywords for "epidermolysis bullosa" and "family". Literature reviews, conference proceedings, conference reports, protocol papers, dissertations/theses, and report documents will be excluded.
Management information
Registered date
| 2026 | Year | 05 | Month | 20 | Day |
Last modified on
| 2026 | Year | 05 | Month | 20 | Day |
Link to view the page
Value
https://center6.umin.ac.jp/cgi-open-bin/icdr_e/ctr_view.cgi?recptno=R000070526
