epidemiology and phenotyping study (mapp 1)

Study Goals

In 2009 the MAPP Research Network began a longitudinal study that looked at: 

  • How and why patients develop Urologic Chronic Pelvic Pain Syndromes (UCPPS).
  • How UCPPS changes over time.
  • How genes, behavior, lifestyle, and environment contribute to what causes UCPPS. 
  • How differences in brain structure and function may relate to differences in the experience of pain.
  • Whether biological samples contain biomarkers, which can identify the presence of these conditions.
  • Whether experiencing chronic pain in one area of the body affects pain in a different area of the body.

Groups Enrolled


Study Length

One year with an option to extend participation afterwards for up to 5 years.


Study Tasks

All participants at every MAPP Network Recruitment Site completed a baseline clinic visit that involved:

  • Answering a series of questionnaires about bladder and urologic symptoms, personality and moods, stress, fatigue, sleep, and other factors that could influence UCPPS.
  • A blood draw, cheek cell swab, and urine collections.
  • A physical exam
  • A pressure pain sensitivity task

Some recruitment sites added additional tasks. These included:

  • Functional MRI scans
  • Saliva collections

Case participants were asked to continue participation for the next year. This involved:

  • Two more in-person visits at 6 months and 12 months after the baseline visit.
  • Bi-weekly online questionnaires about bladder pain and urinary symptoms.
  • At-home urine collections.

The MAPP 1 study ended on June 2014. A group of participants agreed to keep in touch via online surveys done every 4 months. 


Sites that Participated


University of Washington's Site Specific Study

Some discovery sites developed a study that would be completed alongside the main study.

Our University of Washington site saw the potential of twin research to also provide insights on chronic pelvic pain. In partnership with the University of Washington Twin Registry, we developed a unique site-specific project of studying chronic pelvic pain in female twin pairs. Identical twins share the same genes (DNA) and fraternal twins share about half of their genes.  Comparing the development of chronic pelvic pain between twin pairs can help decipher how DNA and the environment contribute to this condition. The twin study was conducted alongside the main MAPP study. It focused on the same factors, but added the power that twin research provides.