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临床试验/jRCT1050230104
jRCT1050230104已完成不适用

Survey on pulmonary hypertension clinical situation and patients' QOL

Not applicable0 个研究点目标入组 400 人开始时间: 2023年12月1日最近更新:

试验速览

阶段
不适用
状态
已完成
入组人数
400
主要终点
-

研究概览

简要总结

暂无简介。

研究设计

研究类型
Observational

入排标准

年龄范围
20age 0month old over 至 100age 0month old not(—)
性别
All

入选标准

  • For patients criteria:
  • The participating patient association and physician will evaluate patients' eligibility for data collection in the study using specified selection criteria. Any queries regarding these criteria should be discussed with the appropriate sponsor representative before survey distribution.
  • Patients are male or female aged 20 to 100 years of age, inclusive
  • Patients must have a confirmed diagnosis of PAH or CTEPH
  • Before participating in the survey, the participant must read and acknowledge the consent form that permits data collection according to the requirements of the participant's region. By agreeing to the consent form and completing the survey, participants are indicating their consent to the data collection process.
  • For doctors criteria:
  • In order to minimize bias in physician selection, the survey will be conducted using a panel owned by a specialized survey company where physicians are listed. To collect opinions from specialists in the rare diseases PAH and CTEPH, responses will also be requested from advisory physicians of the PH Patient Association.
  • Doctors who see at least one patient with pulmonary hypertension per month at their facility
  • 2 Before participating in the survey, participants must read and acknowledge a consent form that permits data collection in accordance with local requirements. By agreeing to the consent form and completing the survey, participants are indicating their consent to the data collection process.

排除标准

  • For patients:
  • Minors (under 20 years of age)
  • Patients who are unable to understand the material provided
  • Patients who have never been diagnosed or treated for PAH/CTEPH by a physician in the past
  • Patients who did not properly answer the questions provided in the questionnaire
  • For doctors:
  • Doctors who have not responded appropriately to the questions listed on the questionnaire forms

结局指标

主要结局

-

emPHasis-10 (to assess HRQoL) 12-item Medication Adherence Scale (to assess drug adherence )

次要结局

  • Comparison of response or total scores
  • Comparison of treatment goals and desires
  • Differences in expectations and goals
  • Current preference and satisfaction

研究者

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