The MAPP research network: design, patient characterization and operations

J Richard Landis; David A Williams; M Scott Lucia; Daniel J Clauw; Bruce D Naliboff; Nancy A Robinson; Adrie van Bokhoven; Siobhan Sutcliffe; Anthony J Schaeffer; Larissa V Rodriguez; Emeran A Mayer; H Henry Lai; John N Krieger; Karl J Kreder; Niloofar Afari; Gerald L Andriole; Catherine S Bradley; James W Griffith; David J Klumpp; Barry A Hong; Susan K Lutgendorf; Dedra Buchwald; Claire C Yang; Sean Mackey; Michel A Pontari; Philip Hanno; John W Kusek; Chris Mullins; J Quentin Clemens

doi:10.1186/1471-2490-14-58

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The MAPP research network: design, patient characterization and operations

Journal article

Open access

Peer reviewed

The MAPP research network: design, patient characterization and operations

J Richard Landis, David A Williams, M Scott Lucia, Daniel J Clauw, Bruce D Naliboff, Nancy A Robinson, Adrie van Bokhoven, Siobhan Sutcliffe, Anthony J Schaeffer, Larissa V Rodriguez, …

BMC urology, Vol.14(1), pp.58-58

2014

DOI: 10.1186/1471-2490-14-58

PMCID: PMC4126395

PMID: 25085119

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Abstract

Background: The "Multidisciplinary Approach to the Study of Chronic Pelvic Pain" (MAPP) Research Network was established by the NIDDK to better understand the pathophysiology of urologic chronic pelvic pain syndromes (UCPPS), to inform future clinical trials and improve clinical care. The evolution, organization, and scientific scope of the MAPP Research Network, and the unique approach of the network's central study and common data elements are described. Methods: The primary scientific protocol for the Trans-MAPP Epidemiology/Phenotyping (EP) Study comprises a multi-site, longitudinal observational study, including bi-weekly internet-based symptom assessments, following a comprehensive in-clinic deep-phenotyping array of urological symptoms, non-urological symptoms and psychosocial factors to evaluate men and women with UCPPS. Healthy controls, matched on sex and age, as well as "positive" controls meeting the non-urologic associated syndromes (NUAS) criteria for one or more of the target conditions of Fibromyalgia (FM), Chronic Fatigue Syndrome (CFS) or Irritable Bowel Syndrome (IBS), were also evaluated. Additional, complementary studies addressing diverse hypotheses are integrated into the Trans-MAPP EP Study to provide a systemic characterization of study participants, including biomarker discovery studies of infectious agents, quantitative sensory testing, and structural and resting state neuroimaging and functional neurobiology studies. A highly novel effort to develop and assess clinically relevant animal models of UCPPS was also undertaken to allow improved translation between clinical and mechanistic studies. Recruitment into the central study occurred at six Discovery Sites in the United States, resulting in a total of 1,039 enrolled participants, exceeding the original targets. The biospecimen collection rate at baseline visits reached nearly 100%, and 279 participants underwent common neuroimaging through a standardized protocol. An extended follow-up study for 161 of the UCPPS participants is ongoing. Discussion: The MAPP Research Network represents a novel, comprehensive approach to the study of UCPPS, as well as other concomitant NUAS. Findings are expected to provide significant advances in understanding UCPPS pathophysiology that will ultimately inform future clinical trials and lead to improvements in patient care. Furthermore, the structure and methodologies developed by the MAPP Network provide the foundation upon which future studies of other urologic or non-urologic disorders can be based.

Neuroimaging

Urine biomarkers

Plasma biomarkers

Study Protocol

Urologic chronic pelvic pain syndromes

Chronic prostatitis

Interstitial cystitis

Non-urologic associated syndromes

Quantitative sensory testing (QST)

Details

Title: Subtitle: The MAPP research network: design, patient characterization and operations
Creators: J Richard Landis - Department of Biostatistics and Epidemiology, Perelman School of Medicine at the University of Pennsylvania, Philadelphia, PA, USA
David A Williams - Departments of Anesthesiology, Medicine and Psychiatry, University of Michigan, Ann Arbor, MI, USA
M Scott Lucia - Department of Pathology, University of Colorado Anschutz Medical Campus, Aurora, CO, USA
Daniel J Clauw - Departments of Anesthesiology, Medicine and Psychiatry, University of Michigan, Ann Arbor, MI, USA
Bruce D Naliboff - Departments of Medicine, Psychiatry, and Gastroenterology, University of California, Los Angeles, CA, USA
Nancy A Robinson - Department of Biostatistics and Epidemiology, Perelman School of Medicine at the University of Pennsylvania, Philadelphia, PA, USA
Adrie van Bokhoven - Department of Pathology, University of Colorado Anschutz Medical Campus, Aurora, CO, USA
Siobhan Sutcliffe - Division of Public Health Sciences, Department of Surgery, Washington University, St Louis, MO, USA
Anthony J Schaeffer - Department of Urology, Northwestern University, Chicago, IL, USA
Larissa V Rodriguez - Department of Urology, University of Southern California, Beverly Hills, CA, USA
Emeran A Mayer - Division of Digestive Diseases, University of California, Los Angeles, CA, USA
H Henry Lai - Division of Urologic Surgery, Department of Surgery, Washington University School of Medicine, St. Louis, MO, USA
John N Krieger - Department of Urology, University of Washington, Seattle, WA, USA
Karl J Kreder - Department of Urology, University of Iowa, Iowa City, IA, USA
Niloofar Afari - VA Center of Excellence for Stress and Mental Health, University of California San Diego, San Diego, CA, USA
Gerald L Andriole - Division of Urologic Surgery, Department of Surgery, Washington University School of Medicine, St. Louis, MO, USA
Catherine S Bradley - Departments of Obstetrics and Gynecology, Urology and Epidemiology, University of Iowa, Iowa City, IA, USA
James W Griffith - Department of Medical Social Sciences, Northwestern University, Chicago, IL, USA
David J Klumpp - Department of Urology, Northwestern University, Chicago, IL, USA
Barry A Hong - Departments of Psychiatry and Medicine, Washington University School of Medicine, St. Louis, MO, USA
Susan K Lutgendorf - Departments of Obstetrics and Gynecology, Urology and Epidemiology, University of Iowa, Iowa City, IA, USA
Dedra Buchwald - Departments of Epidemiology and Medicine, University of Washington, Seattle, WA, USA
Claire C Yang - Department of Urology, University of Washington, Seattle, WA, USA
Sean Mackey - Department of Anesthesiology, Division of Pain Medicine, Stanford University School of Medicine, Palo Alto, CA, USA
Michel A Pontari - Department of Urology, Temple University School of Medicine, Philadelphia, PA, USA
Philip Hanno - Department of Urology, Perelman School of Medicine at the University of Pennsylvania, Philadelphia, PA, USA
John W Kusek - National Institute of Diabetes and Digestive and Kidney Diseases, National Institutes of Health, Bethesda, MD, USA
Chris Mullins - National Institute of Diabetes and Digestive and Kidney Diseases, National Institutes of Health, Bethesda, MD, USA
J Quentin Clemens - Department of Urology, Division of Neurourology and Pelvic Reconstructive Surgery, University of Michigan, Ann Arbor, MI, USA
Resource Type: Journal article
Publication Details: BMC urology, Vol.14(1), pp.58-58
DOI: 10.1186/1471-2490-14-58
PMID: 25085119
PMCID: PMC4126395
NLM abbreviation: BMC Urol
ISSN: 1471-2490
eISSN: 1471-2490
Publisher: BioMed Central
Language: English
Date published: 2014
Academic Unit: Epidemiology; Psychological and Brain Sciences; Iowa Neuroscience Institute; Obstetrics and Gynecology; Urology
Record Identifier: 9984051737702771

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