Exploring Patient Reported Outcomes in Inherited Ichthyosis
NCT ID: NCT06123091
Last Updated: 2023-11-08
Study Results
The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.
Basic Information
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UNKNOWN
20 participants
OBSERVATIONAL
2023-09-01
2024-12-01
Brief Summary
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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.
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Detailed Description
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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.
Conditions
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Study Design
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COHORT
PROSPECTIVE
Study Groups
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Congenital ichthyosis patients
Questionnaires
Questionnaires with patient reported outcome measures
Questionnaires to gain insight of the prevalence of extracutaneous manifestations and the impact of the disease on the quality of life.
Interventions
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Questionnaires with patient reported outcome measures
Questionnaires to gain insight of the prevalence of extracutaneous manifestations and the impact of the disease on the quality of life.
Eligibility Criteria
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Inclusion Criteria
* Clinically and genetically confirmed congenital ichthyosis
Exclusion Criteria
* Not able to read Dutch
* Not able to fill in questionnaires online or in print
16 Years
ALL
No
Sponsors
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Maastricht University Medical Center
OTHER
Responsible Party
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Principal Investigators
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Antoni C Gostynski, MD, PhD
Role: PRINCIPAL_INVESTIGATOR
Maastricht UMC+
Locations
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Maastricht University Medical Centre +
Maastricht, , Netherlands
Countries
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Central Contacts
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Facility Contacts
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Other Identifiers
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METC2023-0122-A-1
Identifier Type: -
Identifier Source: org_study_id
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