A survey of patients and families with gastrointestinal polyposis syndromes from children to adults

JRCT ID: jRCT1031230466

Registered date:21/11/2023

Basic Information

• Recruitment status: Recruiting
• Health condition(s) or Problem(s) studied: Peutz-Jeghers syndrome, Juvenile polyposis syndrome, Cowden syndrome, PTEN hamartoma tumor syndrome
• Date of first enrollment: 21/11/2023
• Target sample size: 100
• Study type: Other

Outcome(s)

• Primary Outcome: Psychosocial burden of the individual (10 items)
• Secondary Outcome: Basic information (10 items), psychosocial burden of family (5 items), information necessary in medical treatment (12 items), items related to quality of life (12 items)

Key inclusion & exclusion criteria

• Age minimum: >= 18age old
• Age maximum: Not applicable
• Gender: Both
• Include criteria: Patients (including family members) with a diagnosis of Peutz-Jeghers syndrome (PJS), Juvenile Polyposis Syndrome (JPS), or Cowden syndrome/PTEN Hamartoma Tumor Syndrome (PHTS).
• Exclude criteria: Those who have difficulty reading the 2D barcode on their devices or answering the questionnaire and those who are unable to cooperate with the survey.

Related Information

• Primary Sponsor: Sakamoto Hirotsugu
• Secondary Sponsor: Kawasaki Yuko
• Source(s) of Monetary Support: Ministry of Health, Labour and Welfare