Milestone IC/BPS Research Studies
Make no mistake. In the past twenty years, the international IC research movement has embraced not only the study of pelvic pain but have made substantial progress in the search for a cure. In the USA alone, the US National Institutes of Health has spent more than $100 million dollars into the study of IC, prostatitis and its related conditions. Many of these are milestone studies that have forever changed the way we look at IC.
Multidisciplinary Approach to Pelvic Pain Research Network (MAPP)
Launched in 2008, the MAPP Research Network embraces a new look or approach to urological chronic pelvic pain. This National Institutes of Health funded program is attempting to understand the “whole body” or “systemic” approach to the study of both interstitial cystitis and chronic prostatitis. They have five key priorities:
- Epidemiology of Disease
- Phenotyping of Urological and Non-Urological symptoms
- Neuroimaging / Neurobiology Studies
- Identification of Biomarkers of Disease
- Characterizations of Organ Cross-Talk / Pain Pathways
RAND IC Epidemiological Studies (RICE)
In the largest and most exhaustive IC epidemiology study ever undertaken, the RAND study has produced vital population data that has helped us understand just how many men and women struggle with symptoms of IC/BPS.
- Prevalence of Symptoms of Bladder Pain Syndrome / Interstitial Cystitis – An estimated 2.7% to 6.5% of United States women have symptoms of interstitial cystitis.
- The Prevalence and Overlap of Interstitial Cystitis/Chronic Prostatitis Syndrome in Men
- Prevalence of Sexual Dysfunction Among Women with Bladder Pain Syndrome/Interstitial Cystitis” – Suggests that women with BPS experience very high levels of sexual dysfunction
- Suicidal Ideation Among Patients with Bladder Pain Syndrome/Interstitial Cystitis – Suggests that BPS/IC severity does NOT increased the likelihood of suicidal thoughts though depression symptoms could.
- Depressive Disorders and Panic Attacks in Women with Bladder Pain Syndrome – Found that depression and panic attacks are high and that treatment needs are unmet, urging clinicans to be alert to these symptoms and to encourage treatment
Boston Area Community Health Study (BACH)
Funded from 2002 to 2005, the Boston Area Community Health (BACH) study was a longitudinal epidemiologic investigation of urogynecologic symptomatology and related risk factors. The study provides data on prevalence and risk factors for urogynecolgic symptoms, including urinary incontinence, benign prostatic hyperplasia, interstitial cystitis, chronic pelvic pain of bladder origin, prostatitis, hypogonadism, erectile dysfunction, and female sexual dysfunction.
Events Preceding IC Study (EPIC)
Begun in 2005 and completed in 2010, the EPIC study was run by Dr. John Warren at the University of Maryland IC Research Center (now closed). It was a case/control study that sough to identify the risk factors for interstitial cystitis by comparing the experiences and medical histories of 400 women who recently developed IC with 400 similar people who do not have the disease.
Maryland Genetics of Interstitial Cystitis Study (MaGIC)
Begun in 2004 and completed in 2008, the MaGIC study sought to identify these genes for susceptibility for interstitial cystitis by studying several hundred families with two or more blood relatives with interstitial cystitis. They hoped to find changes in genes that are found far more commonly in family members who have interstitial cystitis than in those who do not have the disease. Identifying these genes should lead to a better understanding of the cause of interstitial cystitis. Finding the cause is the first step to finding the cure.
Interstitial Cystitis Clinical Research Network (ICCRN)
Launched in 2002, the ICCRN used a national network of clinicians to study the effectiveness of various medications and treatments.