A New Look at Urological Chronic Pelvic Pain ...

To help better understand the underlying causes of the two most prominent chronic urological pain disorders—interstitial cystitis/ bladder pain syndrome (IC/BPS) and chronic prostatitis/chronic pelvic pain syndrome (CP/CPPS), in 2008 the National
Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) of the National Institutes of Health (NIH) established the Multidisciplinary Approach to the Study of Chronic Pelvic Pain (MAPP) Research Network.

The MAPP Research Network embraces a systemic—or whole-body—approach in the study of Urologic Chronic Pelvic Pain Syndrome (UCPPS). UCPPS is a term adopted by the network to encompass both IC/BPS and CP/CPPS, which are proposed as related based on
their similar symptom profiles. In addition to moving beyond traditional bladder- and prostate-specific research directions, MAPP Network scientists are investigating potential relationships between UCPPS and other chronic conditions that are sometimes
seen in IC/PBS and CP/CPPS patients, such as irritable bowel syndrome, fibromyalgia, and chronic fatigue syndrome.

The primary clinical research effort carried out during the MAPP Network’s the first 5-year project period (MAPP I) was a prospective cohort study, the Trans-MAPP Epidemiology/Phenotyping (EP) Study. From 12/14/2009 through 12/14/2012 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 chronic fatigue syndrome (n=200 for all conditions); and healthy controls (n=415). Allstudy
participants were extensively characterized (i.e., phenotyped) at baseline, and UCPPS participants were further assessed during an additional 12 month follow-up period.

Initial analyses of these data have identified a number of provocative findings. There are strong indications those certain subgroups of participants (albeit with small sample sizes) with urinary and non-urinary symptoms tend to improve over time;
whereas other subgroups tend to worsen over time. These patterns of improving or worsening are differentially expressed according to sex, subtype of bladder pain syndrome (BPS), and pain location (e.g., localized to the pelvic region vs pain reported in
the pelvic region as well as other body sites).

The second phase of the MAPP Network is now underway and is designed to conduct a prospective, observational study of men and women with UCPPS, referred to as the Trans-MAPP Symptom Patterns Study (SPS). The this collaborative study will be enriched with
pre-defined subgroups and involves a longer follow-up in order to describe UCPPS symptom changes over time and associated changes in underlying biology. The Trans-MAPP SPS will further investigate and extend upon clinical and biologic insights identified
in MAPP I and will examine the potential for classification of UCPPS patients into clinically meaningful sub-groups based on differing pathophysiological profiles and/or potential to respond to certain clinical interventions.

The highly multidisciplinary (i.e., scientists employing a variety of research approaches) MAPP Network includes researchers with clinical, epidemiological, and basic research expertise, all working collaboratively:

Clinical researchers bring experience treating patients
Epidemiological investigators study the occurrence of, and identify risk factors for, IC/PBS and CP/CPPS
Basic research scientists examine what’s happening on a cellular level
The MAPP Network includes multiple key focus areas, including:

Epidemiology of Disease
Phenotyping of Urological and Non-Urological symptoms
Neuroimaging / Neurobiology Studies
Quantitative Sensory Testing
Identification of Biomarkers of Disease
Potential influences of the microbiome
Studies of relevant UCPPS animal models
The MAPP Research Network is comprised of six Discovery Sites that recruit participants and conduct the research studies and two Core Sites that coordinate data collection, analyze tissue samples, and provide technical support. In addition, the network
supports three non-recruiting Discovery Sites that are focused in specific research areas of interest. To further broaden the scope and investigator base beyond the Discovery and Core sites, the MAPP Network also fosters the incorporation of ancillary
study sites tasked with the conduct of clinical, basic, and translational research performed in collaboration within the network.

By promoting novel and innovative research approaches, the MAPP Network aims to discover new and clinically relevant insights that may lead to improved treatment options and better patient care.

How Can You Participate?
There are currently opportunities for interested participants to get involved with this important research. Your interest and willingness to enroll in the research studies now being initiated by the MAPP Research Network is vitally important to achieving
the goals for improved treatment options and better patient care. Please follow this participant link for updates and for information on how you can get involved. (Learn more)


Network Key Areas of Focus
Epidemiology of Disease
This area of research examines how and why participants develop disease and how their disease changes over time. It also examines genetic, behavioral / lifestyle, environmental, and other factors as contributors to disease.

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Phenotyping of Urological Symptoms
This area of research is charged with developing a “working definition” for urological chronic pelvic pain disorders to be used by MAPP Network scientists. They will also design the diagnostic path—or the series of tests and questions used to
determine if a urological pain participant has IC/PBS or CP/CPPS and what the disease characteristics, including urological symptom profiles, are for participants (i.e., the phenotype). The definitions and scientific tools developed by this group will be
used in all MAPP Network studies.

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Non-Urological Phenotying
This area of research examines disease characteristics, including symptoms, of participants with pain conditions not specific to urological systems (e.g., the bladder and prostate). The questionnaire data and other tests to assess participant
characteristics (i.e., phenotype) across a number of conditions potentially found in association with IC/PBS and/or CP/CPPS, such as irritable bowel syndrome, fibromyalgia, and chronic fatigue syndrome, will also be used in all MAPP Network studies.

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Neuroimaging / Neurobiology
This area of research intends to look at brain structure and function (e.g., neuroimaging studies) to help diagnosis and define certain pain conditions. Types of neuroimaging tests include computed tomography, magnetic resonance imaging (MRI), and
positron-emission tomography. In pelvic pain conditions, functional MRIs may be used to confirm symptoms in patients suffering from painful conditions.

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Biomarkers of Disease
This area of research intends to determine the "biomarkers" that will help describe the causes of pelvic pain syndromes. Biomarkers are unique substances or features (e.g., proteins, genes, features of anatomy, etc) found in people with specific
conditions that serve to identify the presence of diseases. Identification of biomarkers can help us diagnose and predict disease and may lead to a better understanding of the underlying causes of disease. Also, biomarkers can help physicians and
researchers sub-group patients for more targeted treatments or research studies.

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UCPPS Translational Animal Models
Investigators working in this area are developing animal models that mirror key symptoms of human UCPPS patients, primarily pelvic pain and urologic dysfunction (e.g., frequency). Model systems developed in this way are proposed as more meaningful in
developing insights into the human condition and provide results expected to be more directly testable in humans and vice versa. Models are being used to test varied ideas of underlying cause for human UCPPS and for in vivo (i.e., in the live animal)
studies assessing clinical and biological insights derived from patients during MAPP I.




http://www.mappnetwork.org

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