The MAPP research network: a novel study of urologic chronic pelvic pain syndromes.

J Quentin Clemens,The Mapp Research Network Study Group ,Ziya Kirkali,Dedra Buchwald,David J Klumpp,Daniel J Clauw,J Richard Landis,M Scott Lucia,Anthony J Schaeffer,Gerald L Andriole,Emeran A Mayer,Chris Mullins,Karl J Kreder,Larissa V Rodríguez,John W Kusek

doi:10.1186/1471-2490-14-57

Abstract

Urologic chronic pelvic pain syndrome (UCPPS) may be defined to include interstitial cystitis/bladder pain syndrome (IC/BPS) and chronic prostatitis/chronic pelvic pain syndrome (CP/CPPS). The hallmark symptom of UCPPS is chronic pain in the pelvis, urogenital floor, or external genitalia often accompanied by lower urinary tract symptoms. Despite numerous past basic and clinical research studies there is no broadly identifiable organ-specific pathology or understanding of etiology or risk factors for UCPPS, and diagnosis relies primarily on patient reported symptoms. In addition, there are no generally effective therapies. Recent findings have, however, revealed associations between UCPPS and “centralized” chronic pain disorders, suggesting UCPPS may represent a local manifestation of more widespread pathology in some patients. Here, we describe a new and novel effort initiated by the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) of the U.S. National Institutes of Health (NIH) to address the many long standing questions regarding UCPPS, the Multidisciplinary Approach to the Study of Chronic Pelvic Pain (MAPP) Research Network. The MAPP Network approaches UCPPS in a systemic manner, in which the interplay between the genitourinary system and other physiological systems is emphasized. The network’s study design expands beyond previous research, which has primarily focused on urologic organs and tissues, to utilize integrated approaches to define patient phenotypes, identify clinically-relevant subgroups, and better understand treated natural history and pathophysiology. Thus, the MAPP Network provides an unprecedented, multi-layered characterization of UCPPS. Knowledge gained is expected to provide important insights into underlying pathophysiology, a foundation for better segmenting patients for future clinical trials, and ultimately translation into improved clinical management. In addition, the MAPP Network’s integrated multi-disciplinary research approach may serve as a model for studies of urologic and non-urologic disorders that have proven refractory to past basic and clinical study.Trial registrationClinicalTrials.gov identifier: NCT01098279 “Chronic Pelvic Pain Study of Individuals with Diagnoses or Symptoms of Interstitial Cystitis and/or Chronic Prostatitis (MAPP-EP)”.

Highlights

Urologic chronic pelvic pain syndrome (UCPPS) encompasses two highly prevalent non-malignant urologic disorders, interstitial cystitis/bladder pain syndrome (IC/Bladder pain syndrome (BPS)) and chronic prostatitis/chronic pelvic pain syndrome (CP/ CPPS)
Numerous studies have been conducted over the past two decades to define the pathophysiology and natural history of UCPPS and to examine the efficacy of therapies. Many of those studies were supported by the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) of the U.S National Institutes of Health (NIH)
The NIDDK subsequently initiated the Chronic Prostatitis Collaborative Research Network (CPCRN) which performed clinical trials for CP/ CPPS [14,15,16,17]. Results from these clinical research studies failed to identify definitive risk factors or generally effective treatments, with the exception of a single study suggesting that myofascial physical therapy might be effective in IC/ BPS [18]

Summary

Background

Urologic chronic pelvic pain syndrome (UCPPS) encompasses two highly prevalent non-malignant urologic disorders, interstitial cystitis/bladder pain syndrome (IC/BPS) and chronic prostatitis/chronic pelvic pain syndrome (CP/ CPPS). Assembled network working groups develop and conduct complementary Trans-MAPP studies that broadly address potential contributions of various physiological systems and hypotheses of underlying etiology, pathophysiology, risk, and relationships between UCPPS and commonly associated non-urologic syndromes These include structural and functional assessments of the central nervous system; efforts to uncover potential contributions of infectious agents to etiology; discovery efforts to identify new biological markers; extensive characterizations of symptom variation (e.g., flares); and efforts to develop new and more informative patient reported outcome measures. Neuroimaging study parameters are standardized across sites and scan data is centrally managed by the University of California at Los Angeles (UCLA) Center for Neurobiology of Stress (painrepository.org), in close collaboration with UCLA-Laboratory of Neuroimaging (LONI), which has extensive experience in the collection, storage and analysis of large multi-site MRI data sets (loni.usc.edu) In this way diverse findings across protocols may be integrated to allow a detailed characterization of a single UCPPS patient or patient sub-groups. These efforts are generating a unique national resource of highly detailed longitudinal clinical and epidemiological data associated with data from additional, integrated phenotyping studies and linked biological samples, for future use by the wider research community through the NIDDK Data and Sample Repositories (http://www3.niddk.nih.gov/ researchprograms/repositories/)

Conclusions

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