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New IC/BPS Treatments Can’t Be Developed Without Patient Help – You Can Make A Difference in 2018!

Do you know that no new treatments can be approved unless they pass real life testing with IC patients? When studies and clinical trials seek patient participants, they are conducting critical research to determine if a new treatment can help. I, for example, participated in the first study on PTNS, now known as Urgent PC. [...]

By |2018-08-15T21:35:45-07:00May 8th, 2018|Clinical Trials, Research|Comments Off on New IC/BPS Treatments Can’t Be Developed Without Patient Help – You Can Make A Difference in 2018!

Beaumont Study Seeks Women With IC/BPS (Royal Oak, MI)

Have you been diagnosed with IC/BPS? If you are a female between the ages of 18 and 85, with urinary frequency, urgency and pelvic discomfort or pain for at least six months, you may be eligible to participate in a clinical research study. IC/BPS affects 15 to 24 percent of adult women and has a [...]

By |2018-05-07T21:03:52-07:00April 25th, 2018|Clinical Trials, Research|Comments Off on Beaumont Study Seeks Women With IC/BPS (Royal Oak, MI)

Key IC & Pelvic Pain Studies From The MAPP Research Network in 2017 – Time to get your nerd on!

A decade into the Multidisciplinary Approach to the Study of Chronic Pelvic Pain (MAPP) Research Network and the research is still going strong. In 2017, the MAPP Network published 12 articles of its findings in various medical journals. Researchers from throughout the United States and Canada continue to work together and join resources to make [...]

By |2018-04-25T14:06:41-07:00April 12th, 2018|Interstitial Cystitis Network Blog, Research|Comments Off on Key IC & Pelvic Pain Studies From The MAPP Research Network in 2017 – Time to get your nerd on!

ICN Founder Jill Osborne Serves on CDMRP Research Panel on Antibiotic Resistant Infections

The Peer Reviewed Medical Research Program (PRMRP) research advocate Jill Heidi Osborne MA recently participated in the evaluation of research applications submitted to the PRMRP sponsored by the US Department of Defense. Ms. Osborne has served as a consumer reviewer for the past six years. As a consumer reviewer, she was a full voting member [...]

By |2018-01-02T15:20:04-07:00December 21st, 2017|ICN Announcements, Industry News, Interstitial Cystitis Network Blog, Research|Comments Off on ICN Founder Jill Osborne Serves on CDMRP Research Panel on Antibiotic Resistant Infections

New IC Patient Survey From USC Seeks To Understand The Impact of Diagnostic Delays In Women With IC/BPS.

A New IC Survey From USC Seeks To Understand The Impact of Diagnostic Delays In Women With IC/BPS. Principal Investigator: Katherine Volpe, MD This survey is being conducted by Katherine Volpe, who is a fellow at the University of Southern California. We know that many women with interstitial cystitis or bladder pain syndrome (IC/BPS) experience [...]

By |2017-11-13T15:48:30-07:00November 13th, 2017|ICN Announcements, Interstitial Cystitis Network Blog, Survey Center|Comments Off on New IC Patient Survey From USC Seeks To Understand The Impact of Diagnostic Delays In Women With IC/BPS.

New IC/BPS Phenotyping System Proposed – From UPOINT to INPUT

The UPOINT System for the Clinical Phenotyping of Chronic Pelvic Pain by Nickel, Shoskes and Racily was the first proposed subtyping system for chronic pelvic and bladder pain. It asked physicians to look at and beyond the bladder in six different areas, including: what urinary symptoms are present? what’s the condition of the bladder (i.e. Hunner’s lesions)? does [...]

By |2017-08-16T21:54:00-07:00August 10th, 2017|Interstitial Cystitis Network Blog, Research|Comments Off on New IC/BPS Phenotyping System Proposed – From UPOINT to INPUT

Patients Report Opiate Pain Medication Their Most Effective Treatment of IC/BPS

Do Patients Perceptions Of Treatment Success or Failure Match Clinical Trial Results? They don’t. When the American Urological Association created their Guidelines for the Diagnosis and Treatment for IC/BPS in 2011 they ranked their treatment options based primarily on clinical trial results.  Researchers in Canada and the USA sought to determine if these treatment [...]

By |2017-08-10T23:12:03-07:00August 10th, 2017|Pain Care, Research|Comments Off on Patients Report Opiate Pain Medication Their Most Effective Treatment of IC/BPS

MAPP Research Network Study Finds That Fungus In Urine Might Be Linked To Urgency and Pain

One of the most promising lines of research in urology today is the study of the biome, the diverse population of bacteria and fungi that live harmoniously in the human body. In previous MAPP Research Network studies, IC patients were found to have high levels of candida/fungi in their urine during flares.(1) Another found [...]

By |2017-08-10T17:10:12-07:00August 10th, 2017|Interstitial Cystitis Network Blog, Research|Comments Off on MAPP Research Network Study Finds That Fungus In Urine Might Be Linked To Urgency and Pain

Real Men Get Real Pelvic Pain Presentation at AUA 2017

Dr. Jeannette Potts Fights Chronic Prostatitis Misdiagnosis and Label - If you've been told that your pelvic pain is the result of chronic prostatitis, you are not alone. If you've spent hundreds if not thousands of dollars on various "prostate centric" antibiotics and other prescriptions, you're in the company of millions of men who, it turns [...]

By |2017-05-11T15:50:08-07:00May 10th, 2017|Interstitial Cystitis Network Blog, Research|Comments Off on Real Men Get Real Pelvic Pain Presentation at AUA 2017

The Economic Toll of Elmiron

67% of Patients Struggle to Pay For the Only Oral Drug Approved for IC/BPS by the US FDA When the patent expired on Elmiron® in January 2010, the IC patient community expected the rapid release of a more affordable generic medication. Swati Spentose, a company located in India, has produced a generic pentosan polysulfate (Brand [...]

By |2017-03-31T13:13:59-07:00March 31st, 2017|Interstitial Cystitis Network Blog, Research|Comments Off on The Economic Toll of Elmiron