The MAPP research network: design, patient characterization and operations

Area of Science:

• Urology
• Pain Medicine
• Epidemiology

Background:

• The National Institute of Diabetes and Digestive and Kidney Diseases established the Multidisciplinary Approach to the Study of Chronic Pelvic Pain (MAPP) Research Network.
• The network aims to elucidate the pathophysiology of urologic chronic pelvic pain syndromes (UCPPS) to guide future clinical trials and enhance patient care.
• The MAPP Network's structure, scope, and unique methodologies, including common data elements, are detailed.

Purpose of the Study:

• To understand the pathophysiology of urologic chronic pelvic pain syndromes (UCPPS).
• To inform the design of future clinical trials for UCPPS.
• To improve the clinical management of patients with UCPPS.

Main Methods:

• A multi-site, longitudinal observational study (Trans-MAPP Epidemiology/Phenotyping Study) evaluated UCPPS patients, healthy controls, and positive controls with related syndromes (Fibromyalgia, Chronic Fatigue Syndrome, Irritable Bowel Syndrome).
• Bi-weekly internet-based symptom assessments and in-clinic deep-phenotyping of urological, non-urological, and psychosocial factors were employed.
• Complementary studies included biomarker discovery, quantitative sensory testing, neuroimaging, and the development of animal models for UCPPS.

Main Results:

• Recruitment exceeded targets, with 1,039 participants enrolled across six US Discovery Sites.
• High rates of biospecimen collection (nearly 100%) and neuroimaging (279 participants) were achieved.
• An extended follow-up study is ongoing for 161 UCPPS participants.

Conclusions:

• The MAPP Research Network offers a novel, comprehensive approach to studying UCPPS and associated non-urologic conditions.
• Expected findings will significantly advance the understanding of UCPPS pathophysiology, informing future clinical trials and patient care.
• The network's methodologies provide a framework for future research into other urologic and non-urologic disorders.