Exploring Patient Reported Outcomes in Inherited Ichthyosis
试验速览
- 阶段
- 不适用
- 状态
- 招募中
- 入组人数
- 20
- 试验地点
- 1
- 主要终点
- Extracutaneous manifestations in general
研究概览
简要总结
The goal of this observational study is to learn about the presence of extracutaneous manifestations in patients with congenital ichthyosis.
The main question it aims to answer is:
- Do patients with congenital ichthyosis experience extracutaneous manifestations?
Participants will fill in questionnaires in which the investigators will explore whether patients experience extracutaneous manifestations, and if so what these manifestations entail. Examples of such questions are whether patients experience (joint) pain or whether they experience hindrance due to their complaints.
详细描述
There is only limited knowledge about extracutaneous manifestations in patients with congenital ichthyosis. With this study, the investigators aim to identify extracutaneous manifestations with questionaires based on patient reported outcomes.
Secondary research questions include:
- What is the prevalence of joint complaints in patients with congenital ichthyosis
- What is the influence of ichthyosis on the quality of life patients experience
Furthermore, the investigators aim to discover knowledge gaps in current patient management and possible areas of improvement in patient care towards healthcare professionals.
研究设计
- 研究类型
- Observational
- 观察模型
- Cohort
- 时间视角
- Prospective
入排标准
- 年龄范围
- 16 Years 至 —（Child, Adult, Older Adult）
- 性别
- All
- 接受健康志愿者
- 否
入选标准
- •16 years and older
- •Clinically and genetically confirmed congenital ichthyosis
排除标准
- •<16 years of age
- •Not able to read Dutch
- •Not able to fill in questionnaires online or in print
结局指标
主要结局
Extracutaneous manifestations in general
时间窗: Day 1
Evaluation of possible extracutaneous manifestations patients with congenital ichthyosis exhibit. This is measured by a questionnaire the investigators have composed. The questions entail patient reported outcomes on their general health and the health issues patients experience due to ichthyosis.
次要结局
- Prevalence of joint complaints measured by the Psoriasis Epidemiology Screening Tool(Day 1)
- Prevalence of joint complaints Early Arthritis for Psoriatic patients questionnaire(Day 1)
- Prevalence of itch complaints(Day 1)
- Prevalence of pain complaints(Day 1)
- Prevalence of joint complaints measured by the Early Arthritis Recognition Clinic questionnaire(Day 1)
- Impact of ichthyosis on quality of life measured by Skindex-29(Day 1)
- Impact of ichthyosis on quality of life(Day 1)
- Prevalence of joint complaints measured by the Clinical Arthritis Rule questionnaire(Day 1)