Trans-MAPP Epidemiology & Phenotyping Study (EPS)

The goals of the MAPP Research Network’s first phase (MAPP I) central clinical study – The Trans-MAPP Epidemiology and Phenotyping Study (EPS) – were to gain a better understanding of:

1. How pain and other symptoms are felt in people with Urologic Chronic Pelvic Pain Syndrome (UCPPS) and how they impact overall health;
2. The biological and clinical contributors to symptoms and how these may define distinct UCPPS sub-groups;
3. How UCPPS relates to other common co-occurring chronic overlapping pain conditions (COPCs), such as Fibromyalgia,
Chronic Fatigue Syndrome, or Irritable Bowel Syndrome.

All studies were designed to better understand UCPPS pathophysiology and identify distinct symptom profiles and to inform the design of future, evidence based UCPPS clinical trials for improving clinical management of patients.

The EPS was conducted by six major Discovery Sites, two major Core Sites, and a number of additional integrated research groups:

  • Discovery Sites:
    • Northwestern University, Chicago, IL
    • University of California, Los Angeles, Los Angeles, CA
    • University of Iowa, Iowa City, IA
    • University of Michigan, Ann Arbor, MI
    • University of Washington/Washington State University, Seattle, WA
    • Washington University, St. Louis, St. Louis, MO
  • Core Sites:
    • Data Coordinating Core (DCC): University of Pennsylvania, Philadelphia, PA
    • Tissue Analysis and Technology Core (TATC): University of Colorado in Denver, Denver, CO
  • Additional, Sub-contracted Research Sites:
    • The University of Alabama at Birmingham, Birmingham, AL
    • Stanford University, Stanford, CA
    • Harvard Medical School/Boston Children’s Hospital, Boston, MA
    • Queens University, Kingston Ontario, Canada
  • Neuroimaging Core Support Provided by:
    • The University of Southern California (USC) Laboratory of Neuroimaging (LONI)

EPS Design and Data/Biosample Domains

The MAPP Research Network’s Trans-MAPP Epidemiology and Phenotyping Study (EPS) was a prospective, observational cohort study of the 1-year treated natural history (i.e., participants continued standard care by their physician while in the study) of UCPPS. In addition to enrolling men and women with UCPPS, two additional comparison groups were enrolled: “positive” control participants with one or more chronic overlapping pain conditions (COPCs) that included fibromyalgia (FM), irritable bowel syndrome (IBS), and/or chronic fatigue syndrome (CFS); and a healthy control group (individuals without UCPPS symptoms).

From 12/14/2009 through 12/14/2012 a total of 1,039 men and women were enrolled, including persons with UCPPS (n=424); persons with other co-morbid illnesses, including fibromyalgia, irritable bowel syndrome, and/or chronic fatigue syndrome (n=200 for all conditions); and healthy controls (n=415). All study participants were extensively characterized (i.e., phenotyped) at an initial baseline in-clinic visit, and UCPPS participants were further assessed during an additional 12-month follow-up period. Some participants also participated in several additional, integrated studies at individual Network sites. See About the MAPP Network and Resources tabs for the general MAPP I EPS Cohort data domains and participant assessments.

graphic showing percent of IC (1.3%) /PBS (2.7%) and CP/CPPS (up to 6.4%) in MAPP. Total recruitment 1,039 enrolled - 40% males, 60% females.

Extensive urologic and non-urologic clinical data and biological samples/measures were collected from the MAPP I EPS cohorts during an initial in-clinic deep phenotyping visit.

The UCPPS cohort was further deep-phenotyped in-clinic at 6 and 12 months. The 12-month longitudinal follow-up for UCPPS participants also included data collection at 25 bi-weekly web-based contacts. Expanded domains of data were collected at these web-based contacts at months 2,4,6,8, and 10 (“Bi-monthly contacts”).

An extensive array of measures from multiple data domains (urological, nonurological, psychosocial, quantitative sensory testing, neuroimaging and molecular phenotyping) were collected at selected study contacts/visits during the EPS cohort using specialized data instruments (abbreviations are defined). Studies using relevant animal models were also performed in MAPP I to complement clinical studies.

Design of MAPP I EPS Study

Patient visits over the period

Sequence of Trans-MAPP Epidemiology and Phenotyping (EP) Study Screening, Phenotyping, Biospecimen Collection and Enrollment into the EP Study.

flow diagram showing Trans-MAPP EP Study Baseline Clinic Visit - Eligibility Screening w/Phenotyping & Biosample collection.

For Additional Information on the Design and Goals of the Trans-MAPP EPS see:

Landis JR, Williams DA, Lucia MS, The MAPP research network: design, patient characterization and operations. BMC Urol.2014 Aug 1;14:58. doi: 10.1186/1471-2490-14-58. PMID: 25085119; PMC4126395.

Clemens JQ, Mullins C, Kusek JW, The MAPP research network: a novel study of urologic chronic pelvic pain syndromes. BMC Urol. 2014 Aug 1;14:57. doi: 10.1186/1471-2490-14-57. PMID: 25085007; PMC4134515.

For a Summary of Some of the Major Findings from the Trans-MAPP EPS see:

Clemens JQ, Mullins C, Ackerman AL, Urologic chronic pelvic pain syndrome: insights from the MAPP Research Network. Nat Rev Urol. 2019 Mar;16(3):187-200. doi: 10.1038/s41585-018-0135-5. PMID: 30560936; PMCID: PMC6800057