Mucopolysaccharidosis
Conditions
Interventions
None listed
Sponsors
Kansai Medical University
Eligibility
Sex/Gender
All
Inclusion criteria
Inclusion criteria: Patients 1) Patients aged 18 years or older diagnosed with a type of mucopolysaccharidosis without intellectual disability (diagnosed by developmental testing or genetic testing) 2) Patients aged 16 years or older but under 18 years of age diagnosed with a type of mucopolysaccharidosis without intellectual disability (diagnosed via developmental assessment or genetic testing), where both the patient and guardian have provided written consent for study participation (Since the patient is a minor, consent must be obtained from both the patient and guardian. If the guardian wishes to participate in the study, they may attend the interview). 3) No gender restrictions 4) Individuals who have received sufficient explanation regarding the purpose and content of this study and have provided written consent to participate 5) Individuals capable of communicating in Japanese 6) Individuals able to participate in online or in-person interviews Guardian 1) Guardian of a patient diagnosed with mucopolysaccharidosis, regardless of the patient's age or presence of intellectual disability 2) No gender restrictions 3) Individuals who have received a thorough explanation of the purpose and content of this study and have provided written consent for research participation 4) Individuals capable of communicating in Japanese 5) Individuals able to participate in online or in-person interviews
Exclusion criteria
Exclusion criteria: Patients 1) Individuals deemed unable to participate in the interview survey due to severe physical complications 2) Other individuals deemed unsuitable as research subjects by the principal investigator (or co-investigator) Guardian 1) Individuals whose patient is undergoing acute-phase treatment such as hospitalization due to severe physical complications and is deemed unable to participate in the interview survey 2) Other individuals deemed unsuitable as research subjects by the principal investigator (or co-investigator)
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| Verbatim Transcript of the Interview | — |
Countries
Japan
Contacts
Public ContactYuta Koto
Kansai Medical University Faculty of Nursing
Outcome results
None listed