We were heartbroken to learn that Rosiptor (AQX-1125), once believed to be a promising new therapy for interstitial cystitis and bladder pain syndrome, has failed to demonstrate success in their latest clinical trial, the Phase 3 LEADERSHIP 301 study. In a press conference, David Main, CEO of Aquinox Pharmaceuticals, said “This is a disappointing result for [...]
If you struggle with Hunner's lesions (aka Hunne's ulcers), the odds are that you've tried a variety of bladder treatments with little effect. Why is Elmiron and/or DMSO ineffective for Hunner's lesions? Because they don't treat the lesion directly. The American Urology Association recommends lesion directed therapy: fulguration, laser therapy and/or triamcinolone injection into the [...]
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. [...]
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 [...]
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 [...]
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 [...]
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 [...]
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 [...]
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 [...]
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 [...]
