Development of a national registry for dermatology - The American Academy of Dermatology's DataDerm

The American Academy of Dermatology’s clinical data registry, DataDerm, was founded in 2016. Currently, over 400 practices, including 1,670 providers are linked to DataDerm’s platform across 25 different electronic health records (EHRs). Collecting real world dermatology data since 2013 on ≥47 million patient encounters from ≥13 million unique patients, DataDerm offers longitudinal insights on the impact of practice patterns on patient care, quality, and safety at scale across both rare and common diseases. For instance, the average length of follow-up of 280,000 patients with psoriasis in DataDerm is 46 months. A partnership with OM1, a data analytics company, allows conversion of unstructured clinical notes into structured elements to address key clinical questions including disease subtypes (i.e. scalp psoriasis) and reasons for medication discontinuation. Among 8,700 patients with psoriasis whose therapy was discontinued, 75% was due to tolerability issues, 12% due to lack of efficacy, and 11% due to cost/insurance issues. OM1 AI technology allows outcomes such as PASI or Hurley score to be imputed from the clinical narrative. Additionally, OM1 links DataDerm with other datasets to offer a comprehensive view of the patient journey and healthcare resource utilization. For the first-time, real-world dermatology practice data are available to inform research efforts, compare treatment regimens, and provide more accurate prevalence rates of skin diseases. Unlike administrative datasets that are limited to coded diagnoses, DataDerm offers granular information on disease severity, location, outcomes, and response to therapy. Future efforts will focus on expanding registry participation and the development of standardized outcomes capture tools to enhance disease outcomes measurement in routine practice.