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Cohort study: Understanding multiorgan autoinflammatory disease (MAID)

What we’re doing

WP3 focuses on identifying and studying patients with type I inflammatory skin diseases in the Central Denmark Region. The goal is to understand how these diseases affect multiple organs, characterise patients’ clinical profiles, and create a long-term cohort for research. Patients identified through this process are invited to join the MAID cohort, contributing to groundbreaking studies on disease mechanisms, treatment outcomes, and long-term health.

Why it matters

The MAID cohort allows researchers to:

  • Understand disease mechanisms across multiple organs
  • Identify risk factors for disease progression
  • Assess the impact of treatments over time
  • Evaluate psychosocial and clinical outcomes

This approach also enables longitudinal studies with follow-ups planned at 5, 10, and 20 years, supporting discoveries that can improve patient care for decades to come.

How we identify patients

Finding patients with multiorgan autoinflammatory diseases requires looking beyond traditional hospital records. While hospital registries provide important information, many patients with skin diseases such as psoriasis are only treated in primary care.

To capture these cases, we use additional sources, including:

  • Prescription records
  • GP visit records
  • Disease-specific registries such as DermBio (psoriasis) and DRK (arthritis)

Advanced algorithms are applied to these data sources to identify patients likely to have MAID. These methods are validated through clinical follow-ups and surveys, ensuring accuracy in patient identification.

Building the MAID cohort

Once patients are identified, we:

  • invite them to participate in the MAID cohort.
  • collect clinical data, biological samples, and patient-reported outcomes (PROs).
  • conduct baseline visits, yearly follow-ups, and assessments during treatment changes or disease flare-ups.

Data are stored in a secure, FAIR-compliant database (Findable, Accessible, Interoperable, Reusable) linked to our biobank. This ensures that information is useful not only for current research but also for future studies and clinical trials.

Collaboration across work packages

WP3 works closely with WP1 and WP2:

  • WP1 contributes long-term follow-up data and patient-reported outcomes
  • WP2 integrates multi-omics analyses and computational modelling
  • Together, these collaborations create a comprehensive picture of multiorgan inflammatory diseases 

Looking ahead

With strong clinical expertise and regular patient flows, WP3 is well-positioned to include a representative number of patients. Given the rising prevalence of autoinflammatory and autoimmune diseases, the cohort is expected to grow over time, supporting ongoing research and improving care for patients today and in the future.

What we expect to deliver in 2 years

  • Estimation of the number of patients with type I inflammatory skin diseases and those with multiorgan involvement in the Central Denmark Region
  • Expansion of the MAID cohort with new participants
  • A robust framework for future cohorts and clinical research workflows within the DREAM project

Principal Investigator

Ellen Margrethe Hauge

Clinical Professor and Chair Department of Clinical Medicine - The Section for Rheumatology

Sub-investigator

Annelli Sandbæk

Clinical Professor Department of Public Health - Institute of General Medical Practice