Data

Disease registries.

Two decades of longitudinal observational data, captured at the moment of clinical encounter from both physicians and patients.

RA registry · 2001 – present

Rheumatoid Arthritis registry.

The RA registry was founded in 2001 and has been continuously collecting data since that time. Over 600 rheumatologists have helped us collect data at 170 sites in over 42 states. We have collected data on just under 460,000 individual visits with a mean disease follow-up duration of 4.2 years and a total of >250,000 patient years of data.

The US rheumatoid arthritis population is unique in that the penetration of biologic agents and JAK inhibitors is at least 50% at any given time, with up to 60% of patients who have ever been exposed to these drugs. As The Corrona Research Foundation (CRF) has access to data collected by CorEvitas, LLC, the CRF can share in one of the most comprehensive data collections ever assembled in patients with these diseases.

460k
Patient visits captured
600+
Contributing rheumatologists
170
Clinical sites
42+
U.S. states
4.2 yr
Mean follow-up
250k+
Patient-years of data
PsA & SpA cohort · 2001 – present

Psoriatic Arthritis (PsA) and Spondyloarthropathies (SpA).

PsA data was collected from the outset of the registry in 2001. The manner in which the data were collected was identical to the RA registry — joint counts, visual analogue scales, patient-reported outcomes, laboratory values, radiographic findings, demographics — covering more than 5,000 patients.

In 2013, under the direction of Dr. Philip Mease, the PsA registry was redesigned to collect the more specific clinical elements relative to the PsA patient including percentage of skin covered by psoriasis, nail involvement, enthesitis, dactylitis and independent VAS assessments of skin and joints. At the same time, a new SpA data collection effort was instituted including occiput-to-wall distance, measured side bends, Shober's index, enthesitis and dactylitis scores.

5,000+
PsA / SpA patients
2001
Original PsA data
2013
Redesigned registry
Dr. Mease
Scientific direction

Specific data elements captured

  • Skin involvement — percentage of body surface area, nail involvement, independent VAS.
  • Joint & entheseal — enthesitis, dactylitis, peripheral joint counts.
  • SpA-specific measures — occiput-to-wall distance, measured side bends, Shober's index.
  • Standard registry elements — safety, toxicity, laboratory values, radiographic outcomes.

Want access to these registries for your research?

Submit a brief two-paragraph letter of intent — the Board reviews for fit, then full proposals advance to the Clinical Investigators Committee.

Start submission →