Psoriasis, atopic dermatitis (eczema) and hidradenitis suppurativa are long-term skin conditions that flare and settle over time. Most of what happens to the skin happens at home, between hospital appointments. A dermatologist usually sees the skin only on the day of the visit, which may not reflect how the condition has been over the preceding months.
This study sets up a long-term research collection, called a cohort, in which people with one of these three conditions take part from home. Once a month, participants use a certified digital health app on their own phone to answer a short set of questions about their symptoms and about how their skin affects daily life, and to take a standard set of photographs of their skin. Twice a year they answer a longer set of questions. Taking part takes about five minutes in most months and about twenty-five minutes twice a year. The app gives step-by-step guidance on lighting, distance and framing at the start of every photo session, so that the photographs can be compared from month to month.
The photographs are reviewed by trained assessors, who score how severe the skin disease looks using the scoring systems established in dermatology research. Three assessors score each set of photographs independently, and their scores are combined according to rules that are set in advance. With the participant's permission, this information is combined with information already recorded during routine care, such as changes in treatment and hospital visits; with pharmacy records showing which medicines were dispensed; and with publicly available daily measurements of air quality, sunshine, ultraviolet radiation and pollen for the area where the participant lives.
Bringing these together makes it possible to study how these conditions change over time, what happens in the period before a flare, and how treatment and the living environment relate to the course of the disease. The collected data are also intended to support the development of computer-based tools that could in future help assess skin disease from photographs.
Taking part does not change the care a participant receives. The study does not provide medical advice, and the data collected are not used for diagnosis, treatment decisions or routine follow-up. Participants who experience worsening symptoms contact their treating physician as usual.
The cohort is also designed so that studies of digital care tools can later be carried out within it, among participants who have agreed in advance to be approached. Each of those studies is registered separately.
Diagnosis of a chronic inflammatory skin disease (psoriasis, atopic dermatitis, hidradenitis suppurativa), as determined by the treating dermatologist.
Currently receiving dermatological care at Medisch Spectrum Twente (MST) or Ziekenhuisgroep Twente (ZGT) at the time of inclusion.
Willing and able to participate in longitudinal monitoring, including completion of questionnaires and submission of standardized photographs.
Sufficient command of the Dutch language to understand the study information and to complete questionnaires.
The patient has insufficient command of the Dutch language resulting in the insufficient ability to understand and/or answer questions
The study population consists of patients of above 16 years old with a chronic inflammatory skin disease who are under treatment at the dermatology department of MST or ZGT at the time of inclusion. Eligible patients are informed about the study during a routine outpatient visit at the dermatology department. Participation is voluntary, and informed consent is obtained prior to inclusion, via the app.
Cohort
Prospective
Not listed
Establish a longitudinal cohort infrastructure
To establish a longitudinal cohort infrastructure for patients with chronic inflammatory skin diseases (psoriasis, atopic dermatitis, hidradenitis suppurativa) that enables the embedding and evaluation of multiple randomized digital care interventions using a cohort multiple randomized controlled trial (cmRCT) design.
Psoriasis Area and Severity Index (PASI) derived from patient-acquired photographs
Consensus PASI score, defined as the mean of three independent scores assigned by calibrated raters from the monthly home photograph set. Psoriasis Area and Severity Index: minimum 0, maximum 72; higher scores indicate more severe disease. Assessed in participants with psoriasis.
Eczema Area and Severity Index (EASI) derived from patient-acquired photographs
Consensus EASI score, defined as the mean of three independent scores assigned by calibrated raters from the monthly home photograph set. Eczema Area and Severity Index: minimum 0, maximum 72; higher scores indicate more severe disease. Assessed in participants with atopic dermatitis.
International Hidradenitis Suppurativa Severity Score System (IHS4) derived from patient-acquired photographs
Consensus IHS4 score, defined as the mean of three independent scores assigned by calibrated raters from the monthly home photograph set. International Hidradenitis Suppurativa Severity Score System: weighted count of nodules, abscesses and draining tunnels; minimum 0, no predefined maximum; higher scores indicate more severe disease. Because photography of sensitive regions is optional, the photograph-derived score is interpreted as a lower bound where affected regions were not photographed. Assessed in participants with hidradenitis suppurativa.
Disease trajectories
To describe disease trajectories over time in patients with chronic inflammatory skin diseases, including patterns of stability and flares as observed through longitudinal photo and PROM monitoring.
Risk factors
To explore factors associated with disease worsening or flares, including patient characteristics, clinical variables and patient-reported signals, and to relate these factors to clinically relevant outcomes such as treatment escalation or unscheduled care.
Assess feasibility
To assess the feasibility, data completeness and patient adherence of long-term home-based photo and PROM collection in routine dermatology care.
Skindex-29 symptoms total score
Skindex-29, a 29-item dermatology-specific health-related quality of life questionnaire. Linearly transformed to a minimum of 0 and a maximum of 100; higher scores indicate greater impairment.
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Medisch Spectrum Twente
Lead sponsor
Ziekenhuisgroep Twente
Collaborator
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