Technical Notes

Tabulation and Presentation of Data

Data in this report are provisional. In terms of the Registry data presented, only information from the Initial Visit form was used for this report.  Missing data prevents the totals for some tables from adding up to the total sample size. Counts of < 5 within a table cell are not presented in order to protect the confidentiality of participants. The data represented in this report include information from 42 participants enrolled in December 2013 and 3119 participants enrolled in 2014.


Age is calculated as of the date of visit at which the information was collected by subtracting the date of birth from the date of visit and dividing by 365.

Health Insurance

Primary health insurance is reported. If only one insurance is reported for a person, it was designated as primary regardless of whether it was specifically indicated as the primary insurance.  If multiple insurances were reported for a person, the indicated primary insurance was specified for that individual.

Figure or table specific comments

Table 1: The denominator (43,522) was calculated by subtracting the number of patients with diagnoses ineligible for the Registry (patients with venous thromboembolism [14,461] or Ehlers-Danlos [131]) from the total number of unique patients (58,114) retrieved from the HTC Population Profile.

Table 4: HIV and hepatitis C and B infection statuses are from Initial Visit form data and are not based on laboratory testing performed for Community Counts.