Introduction
Clinical trials are used to determine whether investigational new drugs or investigational treatments are both safe and effective. IC patients often choose to participate in studies because it may provide access to the latest investigational therapies and medications at no cost. Studies also allow the patient to interact with some of the best IC researchers in the country.
If you are considering participating in a trial, we suggest that you read the following resources:
Clinical Trial & Research News
The Psychological Effect of IC
Rachel Fazio MS PLPC, a licensed counselor and psychology graduate student who was also diagnosed with IC seven years ago, is conducting research about the psychological aspects of IC. As a patient, she was surprised to find that the stereotype among medical professionals that IC is "all in our heads" still exists despite evidence that IC patients have visible bladder damage. To address that stereotype, she is doing a study to look at the psychological profiles of IC patients. She's using the Minnesota Multiphasic Personality Inventory 2, which is sort of a gold standard of psychological testing. It's a simple paper and pencil test though, in this study, it will be conducted via a phone interview.
If you are interested in participating, and we hope you do, please contact Rachel at:
Phone: 417-763-4043
E-mail: rfazio@Forest.edu
NIH Launches Effort To Advance Study of Urologic Chronic Pelvic Pain Disorders
(September 2008) The National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), part of the National Institutes of Health (NIH), announces awards to eight academic research centers to conduct collaborative studies of urologic chronic pelvic pain disorders by looking for clues outside the bladder and prostate. The total research investment for the five-year project is estimated to be up to $37.5 million.
The Multidisciplinary Approach to the Study of Chronic Pelvic Pain (MAPP) Research Network includes six Discovery Sites that will conduct the studies and two Core Sites that will coordinate data collection, analyze tissue samples, and provide technical support. The Discovery Sites are at: Northwestern University, Chicago; the University of California, Los Angeles; the University of Iowa, Iowa City; the University of Michigan, Ann Arbor; the University of Washington, Seattle; and Washington University, St. Louis. Core Sites are at the University of Colorado, Denver and the University of Pennsylvania, Philadelphia.
The MAPP initiative is unusual in requiring investigators to conduct highly collaborative research of the most common urologic chronic pelvic pain syndromes from a broadened systemic perspective. This is a major shift from earlier organ-specific research on the two most prominent urologic chronic pelvic pain disorders, interstitial cystitis/painful bladder syndrome, and chronic prostatitis/chronic pelvic pain syndrome.
Read the official NIDDK announcement
Current Clinical Trials Listings
There are a few services on the web that provide listings of current trials. Clinicaltrials.gov, our favorite, is a service sponsored by the National Institutes of Health. Centerwatch.com is an industry sponsored listing service.
- Genetics of Interstitial Cystitis
- Sacral Neuromodulation in Patients With IC
- An Effectiveness and Safety Study of Pentosan Polysulfate Sodium for the Treatment of Interstitial Cystitis.
- Physical Therapy in Women With Interstitial Cystitis
- Trial Comparing Intravesical Cocktail With Intravesical Dimethyl Sulfoxide (DMSO) in Painful Bladder Syndrome/Interstitial Cystitis (PBS/IC)
- Genetic Studies in Interstitial Cystitis
- An Effectiveness and Safety Study of PD 0299685 for the Treatment of Symptoms Associated With Interstitial Cystitis
- Botox as a Treatment for Interstitial Cystitis in Women
- Acupuncture for the Treatment of Interstitial Cystitis (IC) Symptoms
- Phase II Study to Evaluate the Efficacy and Safety of Two Dosing Regimens of MN-001 in Patients With Interstitial Cystitis
- An Effectiveness and Safety Study of PF-04383119 for the Treatment of Pain in Interstitial Cystitis
- Events Preceding Interstitial Cystitis (EPIC)
- Treatment of Interstitial Cystitis/Painful Bladder Syndrome Using Alternative Techniques: Exercise, Meditation, Tai Chi
- Women's Initiative for Pelvic Pain and Sexual Health (WISH) Program in the Department of Urology at Beaumont
- Linkage Analysis in Interstitial Cystitis
- Effect of Repetitive Transcranial Direct Current Stimulation (tDCS) on Chronic Pelvic Pain
- Web-Based Survey of Pain, Stress and Complementary and Alternative Medicine
- Diagnostic Challenges in IC (and Male CPPS)
- Genetic Study of Chronic Prostatitis/Chronic Pelvic Pain Syndrome (CP/CPPS)
Current NIDDK IC/PBS Research Centers
IC research is done at a wide variety of urology clinics. Many local and regional clinics participate in pharmaceutical company sponsored studies and/or may conduct their own research. Universities are the foundation for IC research not only for their access to excellent researchers but also large populations of patients who might participate. IC research centers which are funded by the National Institutes of Health (NIDDK) are often considered the best in the country.
Currently, there are two research networks, the ICCRN (IC research centers) and the CPCRN (prostatitis research centers) that are united under a single umbrella organization, the UPPCRN (Urologic Pelvic Pain Collaborative Research Network) and, in 2008, the MAPP research network was introduced. The clinics and investigators below are current participates.
CALIFORNIA
Stanford University Medical Center (ICCRN) - Christopher Payne, M.D. & Rodney Anderson, M.D. Contact: Debra Clay, R.N. - Research Coordinator at (650) 724-1753
David Geffen School of Medicine at UCLA (CPCRN) - Mark S. Litwin, M.D., Scott Zeitlin, M.D., Nand S. Datta, M.D. Contact: Gwendolyn Byrd, MA, at (310) 267-2526
King-Drew Medical Center, Urology/Dept. of Surgery (CPCRN) - Dr. Nand Datta Contact: Kawajalen Mervin at 310-668-4545
UCLA (MAPP) - Emeran Mayer MD, Larissa Rodriguez MD. Project Director: Bruce Naliboff, PhD
COLORADO
Univ. of Colorado - Denver (MAPP) - Technology and Tissue Center - M. Scott Lucia MD
ILLINOIS
Loyola University Medical Center (ICCRN) - Marypat Fitzgerald, M.D. & Linda Brubaker, M.D. Contact: Judith Senka, R.N. - Research Coordinator at (708) 216-8495
Northwestern University Feinberg School of Medicine (CPCRN) - Anthony J. Schaefer, M.D., Robert B. Nadler, M.D., J. Quentin Clemens, M.D. Contact: Darlene Marko RN, BSN, CCRC(312) 695-3898
Northwestern University Feinberg School of Medicine (MAPP) - David Klumpp, PhD, Anthony J. Schaefer, M.D. Project Director: Elizabeth Calhoun, PhD
IOWA
University of Iowa Hospitals (ICCRN) - Karl Kreder, M.D. , Michael O’Donnell, M.D. Contact: Mary Eno, R.N. - Research Coordinator at (319) 384-9265 Kelley O’Berry - Recruitment Coordinator at (319) 384-5064
University of Iowa Hospitals (MAPP) - Karl Kreder M.D., Project Directors: Catherine Bradley MD, Yi Luo PhD, Susan Lutgendorf PhD, Michael O'Donnell MD, Satish Rao PhD.
MARYLAND
University of Maryland (ICCRN) - Toby Chai, M.D., Susan Keay, M.D. Contact: Judith Murray, CCRC - Research Coordinator (410) 328-5784
MICHIGAN - Detroit
Henry Ford Hospital (ICCRN) - David Burks, M.D. Contact: Jill Sullivan, R.N., B.S.N. - Research Coordinator at (313) 916-3140 Michelle Peabody, R.N. - Research Coordinator at (313) 916-8265
William Beaumont Hospital (ICCRN) - Kenneth Peters, M.D. Contact: Eleanor Anton, R.N. - Research Coordinator at (248) 551-0885
University of Michigan, Ann Arbor (MAPP) - Daniel Clauw MD, J. Quentin Clemens MD
MISSISSIPPI
The University of Mississippi Medical Center (CPCRN) - Paige White, M.D. Contact: (610) 984-5195
MISSOURI
Washington Univ - St. Louis (MAPP) - Gerald Andriole MD, Chief Division of Urology. Project Directors: Thomas Hooton MD, Graham Colditz MD, Robert Gereau PhD, Timothy Ness MD and Barry Kong PhD.
NEW YORK
University of Rochester Medical Center (ICCRN) - Robert Mayer, M.D. & Edward M. Messing, M.D. Contact: Elizabeth Smith, B.S. - Research Coordinator at (585) 275-0989 Kay Rust, R.N., M.S.N., F.N.P - Research Coordinator at (585) 275-0133
OHIO
Cleveland Clinic (CPCRN) - Daniel Shoskes, M.D., Contact: Donel Murphy (216) 445-7505
PENNSYLVANIA
Univ. of Pennsylvania (ICCRN)- Philip Hanno, M.D. Diane Newman, R.N.C., M.S.N., CRNP Contact: Lilliam Ribeiro, B.S. - Research Coordinator at (215) 615-3780
Univ. Of Pennsylvania (MAPP) - Datacoordinating Center 0 J. Richard Landis MD
Temple University School of Medicine (CPCRN) - Michel A. Pontari, M.D., Contact: Melody Santiago, RN, (215) 707-3783
WASHINGTON
Univ. of Washington (ICCRN) - Richard E. Berger, M.D., Jane Miller, M.D. & Elizabeth A. Miller, M.D. Contact: Sharon Downing, R.N. - Research Coordinator at (206) 598-0850
Univ. of Washington (CPCRN) - John N. Krieger, M.D., P.I., Robert Sweet, M.D., Co-PI & Susan O. Ross, R.N. Contact: Leslie Butler 206-616-7416
Univ. of Washington (MAPP) - Dedra Buchwald MD. Project Directors: Niloofar Afari PhD, John Krieger MD, Alvin Liu PhD
CANADA
Queen's University Kingston, Ontario, Canada (ICCRN) - J. Curtis Nickel, M.D., Contact: Joe Downey, M.Sc., CCRP, (613) 533-2894
MALAYSIA
University of Sciences Malaysia (CPCRN) - Liong Men Long, M.D., Contact: Shaun Lee Wen Huey, Research Coordinator, nuahsell@yahoo.com, Mobile: 012-2030508
A note from ICN Founder Jill Osborne - The best gift that an IC patient can give is the opportunity to learn more about this unique and misunderstood condition by participating in research studies and clinical trials. Whether it's quick phone survey, the donation of blood or urine samples or trying new therapies, the IC research movement depends upon patients like you who can see value in participating. It's a whole new mind set. Instead of saying "Why me?", the IC patient who participates is saying "Why not me? I can be a part of the cure." Wouldn't that be something?
