MAPP research network update

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Wolfcub
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Posts: 119
Joined: Sat Oct 13, 2012 12:06 am
Location: Israel

MAPP research network update

Post by Wolfcub » Wed Aug 06, 2014 2:15 pm

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 and J Quentin Clemens

BMC Urology 2014, 14:58 doi:10.1186/1471-2490-14-58

Published: 1 August 2014

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.

Trial registration

ClinicalTrials.gov identifier: NCT01098279 “Chronic Pelvic Pain Study of Individuals with Diagnoses or Symptoms of Interstitial Cystitis and/or Chronic Prostatitis (MAPP-EP)”. http://clinicaltrials.gov/show/NCT01098279
Full Report: http://www.biomedcentral.com/content/pd ... -14-58.pdf
MAPP Research Network Home Page: http://www.mappnetwork.org/
Age: 30 | Onset Age: 19| Symptoms: Urinary frequency, Urinary urgency, constant 24/7 sensation in the penis (in the tip mainly - burning/pressure/discomfort/"wetness"), Nocturia, discomfort and pressure in the pelvic region radiating to the abdomen and becoming severe as time passes since last urination (resolved in 2014 by myofascial release), Stream velocity is somewhat slow and prolonged with an average velocity of ~13cc/min (and max 18cc/min) found in flowmetry test when bladder is filled with 500cc at age 25 (I always feel like I need to press my abdomen to urinate, improved later on when using alpha blockers)| Helped By: especially MYOFASCIAL RELEASE (especially in the areas of hips and abdomen) - generally resolved my abdominal aches, but penile symptoms remained the same| Worsened By: Coffee and possibly some other food as well| Other comments: Quercetin and acupuncture helped me no more than a placebo effect. Age 25-26: Diagnosed with indirect inguinal hernia and medium hydrocele at the same side. After operation many of the acute symptoms disappeared, but the chronic urinary and pelvic symptoms remained much the same.

Wolfcub
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Posts: 119
Joined: Sat Oct 13, 2012 12:06 am
Location: Israel

Re: MAPP research network update

Post by Wolfcub » Wed Aug 06, 2014 2:25 pm

If you live in the U.S. you might want to participate in the ongoing research:

Contacts
Contact: Nancy Robinson, PhD narobins@mail.med.upenn.edu
Contact: Theressa Creighton, BA theressa@mail.med.upenn.edu

Locations

Alabama
University of Alabama at Birmingham Recruiting
Birmingham, Alabama, United States, 35205
Contact: Timothy J Ness TJNess@uab.edu
Principal Investigator: Timothy J Ness, MD, PhD

California
University of California, Los Angeles Recruiting
Los Angeles, California, United States, 90073
Contact: Suzanne Smith, NP 310-206-0310 srsmith@mednet.ucla.edu
Principal Investigator: Emeran A Mayer, MD
Principal Investigator: Larissa Rodriguez, MD
Stanford University Recruiting
Stanford, California, United States, 94304
Contact: Rachel Moericke 650-723-8250 snapl@stanford.edu
Principal Investigator: Sean Mackey, MD, PhD

Illinois
Northwestern University Recruiting
Chicago, Illinois, United States, 60611
Contact: Darlene Marko, RN, BSN, CCRC 312-695-3898 d-marko@northwestern.edu
Principal Investigator: Anthony J Schaeffer, MD

Iowa
University of Iowa Recruiting
Iowa City, Iowa, United States, 52242
Contact: Mary Eno, RN 319-384-9265
Principal Investigator: Karl J Kreder, MD, MBA

Michigan
University of Michigan Recruiting
Ann Arbor, Michigan, United States, 48106
Contact: Megan Halvorson 734-998-6839 meganeb@med.umich.edu
Contact: Kathy Scott, RN 734-998-7105 jrsj@umich.edu
Principal Investigator: Daniel J Clauw, MD

Missouri
Washington University Recruiting
St Louis, Missouri, United States, 63110
Contact: Viven Gardner, RN, BSN 314-996-8285 gardnerv@wudosis.wustl.edu
Principal Investigator: Gerald Adriole, MD

Washington
University of Washington Recruiting
Seattle, Washington, United States, 98101
Contact: Annemarie Succop 206-543-9731 succop@u.washington.edu
Contact: Susan Ross, RN, MN 206-543-3898 soross@u.washington.edu
Principal Investigator: Dedra Buchwald, MD
Age: 30 | Onset Age: 19| Symptoms: Urinary frequency, Urinary urgency, constant 24/7 sensation in the penis (in the tip mainly - burning/pressure/discomfort/"wetness"), Nocturia, discomfort and pressure in the pelvic region radiating to the abdomen and becoming severe as time passes since last urination (resolved in 2014 by myofascial release), Stream velocity is somewhat slow and prolonged with an average velocity of ~13cc/min (and max 18cc/min) found in flowmetry test when bladder is filled with 500cc at age 25 (I always feel like I need to press my abdomen to urinate, improved later on when using alpha blockers)| Helped By: especially MYOFASCIAL RELEASE (especially in the areas of hips and abdomen) - generally resolved my abdominal aches, but penile symptoms remained the same| Worsened By: Coffee and possibly some other food as well| Other comments: Quercetin and acupuncture helped me no more than a placebo effect. Age 25-26: Diagnosed with indirect inguinal hernia and medium hydrocele at the same side. After operation many of the acute symptoms disappeared, but the chronic urinary and pelvic symptoms remained much the same.

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