None listed
Conditions
Interventions
Others(telehealth) : Experimental-group patients (or the primary caregivers of pediatric patients) receive an explanation of the study and provide written informed consent. After completing the baseli
the number of in-person visits during this period varies by participant depending on disease characteristics and individual circumstances. A post-intervention survey is administered at the end of the
Sponsors
Seoul National University Hospital
Eligibility
Sex/Gender
All
Inclusion criteria
Inclusion criteria: Individuals associated with a designated rare disease (national designation), with the patient receiving care/follow-up at Seoul National University Hospital Adults aged =18 years, who meet either of the following: 2-1) Adult patients (=19years) with a confirmed designated rare disease 2-2) One primary caregiver (=19 years) of a pediatric patient (<18 years) with a confirmed designated rare disease Able to provide written informed consent and participate in study procedures
Exclusion criteria
Exclusion criteria: The primary caregiver of the pediatric patient is under 19 years of age or is unable to complete the questionnaire(s). Individuals with cognitive or communication impairments
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| quality of life;Depression | — |
Secondary
| Measure | Time frame |
|---|---|
| satisfaction | — |
Countries
Korea, Republic of
Contacts
Public ContactYoungshin Joo
Seoul National University Hospital
Outcome results
None listed