Rare respiratory diseases in children: cystic fibrosisRare digestive and nutritional diseases in children: short bowel syndrome and others (including monitoring of symptoms, medications, nutrition, and growth and development)
Conditions
Interventions
Observation group:None
Sponsors
Xinhua Hospital Affiliated to Shanghai Jiao Tong University School of Medicine
Eligibility
Sex/Gender
All
Age
No minimum to 18 Years
Inclusion criteria
Inclusion criteria: 1. Children diagnosed with rare respiratory/digestive and nutritional diseases like cystic fibrosis or short bowel syndrome; 2. Aged 0-18 years; 3. Their main caregivers are the child's parents or legal guardians, who can understand and voluntarily sign the informed consent; 4. Caregivers have basic reading and writing skills and can cooperate to fill out the diary.
Exclusion criteria
Exclusion criteria: 1. The child has other serious, unstable systemic diseases (like severe heart, liver, or kidney failure) that might interfere with keeping records at home; 2. Parents have cognitive impairments, mental illnesses, or are illiterate, making it impossible for them to understand and complete the diary;
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| Parental satisfaction;Doctors' evaluation of the diary information's reference value;Parental caregiving confidence scores; | — |
Countries
China
Contacts
Public ContactRu Jia
Xinhua Hospital Affiliated to Shanghai Jiao Tong University School of Medicine
Outcome results
None listed