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:

• Are Clinical Studies For You?
• My Body On The Line: Take Me For Example.

Clinical Trial & Research News

LiRIS® Clinical Trial Launched in USA & Canada

A new research study is being conducted at investigational sites in the US and Canada for women diagnosed with Interstitial Cystitis. The purpose of this study is to determine the safety, effectiveness and tolerability of an investigational product that delivers the drug lidocaine continuously over 14 days directly into the bladder. Known as LiRIS® , the product is a soft silicone tube containing lidocaine that is placed in the bladder using standard urological procedures in the urologist's office and then is removed 14 days later. This study compares the lidocaine system with a placebo system, the same silicone tube with no active drug.

The study requires participants to complete up to five clinic visits and two phone calls over an eight week period. You may be eligible to participate in this study if you are a female 18 years of age or older, diagnosed with Interstitial Cystitis, and experiencing bladder pain, along with additional criteria. You are not eligible for the study if you are pregnant,

Research Centers in the USA

• Arizona, Glendale - Clinical Trials of Arizona - Contact: Bridget Gonzales 602-789-1650
• California, Glendora - Citrus Valley Medical Research, Inc. - Contact: Lisa Regan 626-914-3295
• Colorado, Denver - Genitourinary Surgical Consultants - Contact: Khalis Mitchell 303-320-0200
• Connecticut, Farmington - Women's Health Specialty Care - Contact: Madeline Vazquez 860-678-3491
• Connecticut, New Britain - Grove Hill Clinical Research - Contact: Lihi Brocke PhD 860-801-6543
• Idaho, Meriden - Idaho Urologic Center - Contact: Shanna Vail 208-639-4938
• Indiana, Jefferson - First Urology - Contact: Christina Dallas 812-206-8161
• Louisiana, Shreveport - Regional Urology LLC - Contact: Connie Nalewaik 318-683-0411
• Massachusetts, Burlington - Lahey Clinical Medical Center - Contact: Linda Toopjian 781-744-8711
• Massachusetts, Watertown - Bay State Clinical Trials, Inc. - Contact: Debbie Cohen RN 617-923-0328
• Michigan, Grand Rapids - Female Pelvic Medicine & Urogynecology - Contact: Beth Rogers 616-450-9598
• Michigan, Royal Oak - William Beaumont Hospital - Contact: Maureen Cooney 248-551-9477
• Nevada, Las Vegas - Sheldon Freedman MD Ltd - Contact: Emily Freedman 702-732-0282
• New York, New Hyde Park - Arthur Smith Institute for Urology - Contact: Monica Johnson 516-734-8515
• New York, Rochester - University of Rochester - Contact: Patricia Conway 585-276-3528
• North Carolina, Winston-Salem - Wake Forest Univ. - Contact: Janet Shuping 336-716-2612
• Ohio, Cleveland - MetroHealth Medical Center - Contact: Marilyn Alejandro-Rodriguez 216-778-8432
• Oklahoma, Oklahoma City - Univ. of OK Health Science Center, Dept of Urology - Contact: Vickie Phillips 405-271-6900
• South Carolina, Myrtle Beach - Carolina Urologic Research Center - Contact: Kimberly McKenzie 843-449-1010 ext 265
• Tennessee, Nashville - Vanderbilt Univ. Medical Center - Contact: Brenda Hughes 615-343-0445
• Washington, Mountlake Terrace - Integrity Medical Research - Contact: Anna Fierro 425-275-0680

Research Centers in Canada

• Canada, British Columbia - Pacific Urological Research - Contact: Jayne Forster-Coull 250-388-0840
• Canada, Ontario - Centre for Applied Urologic Research - Contact: Sylvia Robb, RN 613-548-7800

More centers will be added to the clinicaltrials.gov webpage in the future. If you are interested in finding out more about this study, please go to www.clinicaltrials.gov for more information and site locations near you.

Interstitial Cystitis Study Seeking Participants In Southern California

IC Study, LLC is conducting a clinical research study with an investigational medication for the treatment of interstitial cystitis. Study-related procedures are provided at no cost to study participants. If you or a friend have been diagnosed with interstitial cystitis and are between the ages of 18-65, please contact IC Study, LLC at 760-752-5016 or e-mail: icstudy@icstudy.net

Additional Info can be found at:

- IC Study LLC

- An Investigator Initiated, Randomized, Double-Blind, Placebo-Controlled Study Evaluating the Efficacy of Humira® (adalimumab) For The Treatment of Interstitial Cystitis (IC)

 

Queens University -Vulvodynia Vs. Chronic Pelvic Pain in Women: Neuropathic Pain Conditions? A Pain Characteristics study

(Posted - March 2011) We are currently recruiting women for an online research study being conducted in the Department of Psychology at Queen's University examining characteristics of women who experience pain in the vulvar/genital region and/or the abdominal region.

We are looking for any women who have experienced this kind of pain for at least six months to participate. We are also looking for women who have previously experienced shingles and still feel pain after the rash has healed. Finally, we are looking for women who are not experiencing a chronic pain condition.

The survey takes approximately 30-45 minutes to complete, and all information is completely anonymous. As a thank you, we will be doing four draws each month for $50 prizes.

Please consider participating in this study and please pass on to other women who may be interested. Participants must be fluent in English and over the age of 18.

If interested, please contact the Sexual Health Research Laboratory by phone (613) 533-3276, or email, SHRL@queensu.ca. Alternately, feel free to visit the following website to access the survey directly: https://surveys.psyc.queensu.ca/Checkbox/neuropain.aspx

All calls and email contact are treated with the strictest confidentiality.

This study accepts patients from Canada, the USA and overseas. Must speak english!

Other Recent Studies of Interest

• A pilot study of botulinum toxin for interstitial cystitis/painful bladder syndrome
• AUA 2010 - Randomized multicenter clinical trial shows efficacy of myofascial physical therapy in women with interstitial cystitis/painful bladder syndrome (IC/PBS)
• AUA 2010 - Submucosal injection of triamcinolone for Hunner's ulcer type interstitial cystitis
• A multicenter, randomized, double-blind, parallel group pilot evaluation of the efficacy and safety of intravesical sodium chondroitin sulfate versus vehicle control in patients with interstitial cystitis/painful bladder syndrome
• Editorial - Effect of amitriptyline on symptoms in treatment naïve patients with interstitial cystitis/painful bladder syndrome

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)
  

Federally Funded IC 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.

There have been several IC research network in the past, including the ICCRN and the CPCRN that were united under a single umbrella organization, the UPPCRN (Urologic Pelvic Pain Collaborative Research Network). in 2008, the MAPP research network was introduced and is now the dominant IC research team.

MAPP Study Centers

FLORIDA
University of Miami Miller School of Medicine Miami, FL
Principal Investigator: Thomas M. Hooton, MD
Contact: Gabriel Blaschke (305) 243-2576 gblaschke@med.miami.edu

ALABAMA
University of Alabama at Birmingham Birmingham, AL
Principal Investigator: Timothy J. Ness, MD, Ph.D.
Contact: Beverly Corbitt (205) 934-3751 bcorbitt@uab.edu

MICHIGAN
University of Michigan Ann Arbor, MI
Site Directors: Daniel J. Clauw, MD and Quentin Clemens, MD, MSCI
Contact: Megan Halvorson (734) 998-6839 meganeb@med.umich.edu

ILLINOIS
Northwestern University, Feinberg School of Medicine Chicago, IL
Principal Investigators: David J. Klumpp, Ph.D. and Anthony J. Schaeffer, MD
Contact: Darlene Marko (312) 695-3898 d-marko@northwestern.edu

MISSOURI
Washington University in St. Louis St. Louis, MO
Site Directors: Gerald L. Andriole, MD and H. Henry Lai, MD
Contact: Rebecca Bristol (314) 454-7325 bristolr@wudosis.wustl.edu
Vivien Gardner (314) 996-8285 gardnerv@wudosis.wustl.edu

IOWA
University of Iowa Iowa City, IA
Site Director: Karl Kreder, MD, MBA
Contact: Mary Eno (319) 384-9265 mary-eno@uiowa.edu

WASHINGTON
University of Washington Seattle, WA
Site Director: Dedra Buchwald, MD
Contact: T. J. Sundsvold (206) 616-4497 mapprc@uw.edu

CALIFORNIA
Stanford University Palo Alto, CA
Principal Investigator: Sean Mackey, MD, Ph.D.
Contact: Noorulain Noor (650) 724-0522 snapl@stanford.edu

David Geffen School of Medicine at University of California Los Angeles, CA
Principal Investigators: Emeran A. Mayer, MD and Larissa V. Rodriguez, MD
Contact: Suzanne Smith (310) 206-0310 srsmith@mednet.ucla.edu
Jennifer Soh (310) 206-1757 jsoh@mednet.ucla.edu

 

UCPPN CENTERS (Studies have been completed)

CALIFORNIA

Stanford University Medical Center (ICCRN) - Christopher Payne, 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

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

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

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

MISSISSIPPI

The University of Mississippi Medical Center (CPCRN) - Paige White, M.D. Contact: (610) 984-5195

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

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

CANADA

Queen's University Kingston, Ontario, Canada (ICCRN) - J. Curtis Nickel, M.D., Contact: Joe Downey, M.Sc., CCRP, (613) 533-2894