Winter 2016 Newsletter

Check out our Winter 2016 newsletter!

In this edition we update you on our study enrollment, introduce you to the people who are responsible for man, introduce you to a new smartphone application that we will begin using in our research, and discuss some more research results from MAPP Phase One. 

If you missed our first newsletter you can find it on the Newsletter page under Resources. 

 

Latest Insights

1. Chronic pelvic pain is not just "all in your head," but the brain does have a role to play

Its not uncommon for patients with a chronic illness to be told "it's all in your head."  Well now you can use MAPP data to respond! MAPP research shows that patients with pain and urinary symptoms have differences in brain activity and structure than volunteers without these symptoms. Men with chronic prostatitis, for example, showed different brain activity in the area that controls the pelvic muscles. MAPP's current study has participants complete MRI scans so that we can continue looking into these differences.

2. You are more than one symptom score

In the past, patients with interstitial cystitis (IC) and chronic prostatitis (CP) were asked about their pain and bladder symptoms and given a score that summarizes their case. You might have taken one of these questionnaires yourself - like the "O'Leary-Sant Symptom and Problem Index." This score would be used by doctors to manage care and by researchers as an indicator of symptom severity. MAPP found though that one score can actually mask important differences. Pain symptoms and bladder symptoms seem to change independently. For example, a patient might have pain that gets better or worse, but their bladder symptoms stay the same. Researchers and doctors can use this information going forward to improve patient care.

3. A natural body response may have gone overboard

Inflammation is a natural response that helps you fight off infection, but may be incorrectly activated in patients with pelvic pain. MAPP found certain markers in the blood that relate to inflammatory responses and IC. Women with IC appear to have more of these markers than women without pain. The next step is to look at these markers in a wider range of patients.

Read more about these insights in this excellent summary of MAPP research, written by the NIDDK:

NIDDK Recent Advances & Emerging Opportunities 2014 - MAPP Feature

 

 

MAPP is now recruiting!

We are excited to announce that MAPP’s new study, called the Symptom Pattern Study, is open for recruitment.

The Symptom Pattern Study (MAPP 2) takes what we learned from the Epidemiology and Phenotyping Study (MAPP 1) and sets out to answer new research questions. The ultimate goal of MAPP is discover the underlying cause(s) of urologic chronic pelvic pain. The hope is that discoveries from this study will lead toward better, more personalized treatment options for these conditions. To reach these goals MAPP 2 will:

  • Track participants over a longer period of time than previous studies, so we can improve our understanding of what causes symptoms to get better or worse.
  • Take images of the brain using magnetic resonance imaging (MRI) to see how brain activity and structure relate to pelvic pain.
  • Investigate the functioning of the central nervous system (which sends signals throughout the body) in people with chronic pelvic pain.
  • Conduct genetic testing to better understand how differences in DNA affect pelvic symptoms.
  • Collect biological specimens to look for markers or microbes that correlate with bladder or prostate pain.
  • Follow any changes in medical treatment for pelvic pain to see how effective different therapies are.

To get started, visit our Study Participation page.

If you have any other questions about participating, feel free to contact us or visit our FAQ page.

February Newsletter

We are proud to present our first MAPP newsletter!

Though this is often said, it is worth repeating: Study participants make our research progress possible. We can't thank volunteers enough for donating their time to improving the lives of people with chronic prostatitis and interstitial cystitis. In exchange, we want to share our research progress with you. We hope to provide regular newsletters that bring you into the loop on what we've found and where we're going. 

Our first newsletter is a recap about the MAPP Research Network and our Phase One Study, with a spotlight on our findings about pain processing in patients with chronic pelvic pain. 

Newsletter: Volume 1 - February 2015 

Your Input on MAPP 2!

We’ve been busy planning for our second 5 years of research called MAPP 2. This next study builds on findings in MAPP 1 and sets out to answer new questions about UCPPS. 

In order to make the best study possible we need your feedback! Please take a few minutes to answer our survey about the study we’re designing by clicking the link below:

MAPP 2 Opinion Survey

When you click on the link you can read about the study and let us know what you think. We appreciate any comments you might have as we work towards the launch of MAPP 2!

Website Launch

Today, a diagnosis of Interstitial Cystitis or Chronic Prostatitis often means a lifetime of managed pain. Treatment may be hit-or-miss, and many patients express frustration at the lack of awareness and progress related to their condition.

The MAPP Research Network is dedicated to you. MAPP was established by the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), a division of the National Institute of Health. Our purpose is to study urologic chronic pelvic pain syndromes (UCPPS), a term that includes interstitial cystitis, bladder pain syndrome (or painful bladder syndrome), chronic prostatitis, and chronic pelvic pain syndrome. The goal is to take a different approach than previous studies and make some much needed progress in understanding why chronic pelvic pain happens, why symptoms get worse than usual at times, and why symptoms improve in some people but not in others.

Read more about our Network's history...

Our first phase of research - called the Epidemiology and Phenotyping Study (also known as MAPP 1) - was completed in June 2014. We enrolled three different groups:

  1. patients with UCPPS
  2. participants who experience one of three different chronic pain disorders:
  3. healthy control participants - those without chronic pain

This was a year-long study comparing the behavior, genes, and environment of these three groups to determine what causes pain in some but not others. Study participants completed in-person visits that included a physical exam,  pain sensitivity tests, and collection of biological specimens. In addition, participants completed questionnaires about their pain, medical history, emotions, lifestyle, and many other parts of daily life. Some MAPP Network sites also performed functional MRI scans of the brain, or held focus groups about the impact of UCPPS.

Read more about MAPP 1...

Findings from our first phase of research are just being submitted to medical journals for review and publishing. When articles are available we will be sure to post them on our publications page. 

The University of Washington (UW) is proud to be involved as a research site in the MAPP Network. We are excited to launch our new UW MAPP website at www.mappuw.org Our site is a complement to the main MAPP Network site, providing information about our research and an easy way to keep in touch with us. 

Stay tuned for more information about MAPP 2!