A note from ICN Founder Jill Osborne - Clinical trials offer patients the opportunity to work with leading cliniciansThe best gift that a patient can give to the IC movement is their participation in research studies and trials that helps to expand our knowledge of IC and develop new treatments. 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?
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
Do you have a study or trial to list? Click here for more information on how you can introduce your study to our our members!
A New Medical Research Study for Women with Interstitial Cystitis/Bladder Pain
(Updated - 11/16/12)
Afferent Pharmaceuticals, Inc. is conducting a medical research study at 18 research study centers in the US for women with moderate to severe Interstitial Cystitis/Bladder Pain Syndrome (IC/BPS). The purpose of this study is to determine the safety, effectiveness and tolerability of an investigational medication (called AF-219) for the treatment of IC/BPS. AF-219 may relieve sensitive bladder nerves by blocking P2X3 receptors. As a result, AF-219 could play a role in the treatment of IC/BPS symptoms, including pain. It is unknown if AF-219 will relieve IC/BPS symptoms since this is the first research study of AF-219 in IC/BPS.
AF-219 is a tablet that is taken twice daily and will be compared to a placebo tablet that looks similar to the investigational medication, but contains no active ingredient.
In order to qualify for this research study, you must be a woman between 18 and 80 years of age and you must have been experiencing bladder pain, pressure or discomfort, along with frequent urination, for at least 6 months. Additional criteria will be discussed with you by the study doctor at the research study center. Those who qualify for this research study can expect their participation to involve up to 7 visits to the study center and one phone call over a period of 9 weeks. Qualified participants receive all study-related care and study medication at no cost, plus compensation for time and travel. You are not eligible for the study if you are pregnant or breastfeeding.
The following research study centers will be enrolling participants:
- Arizona, Glendale – Clinical Trials of Arizona, Inc. – Contact Ana Ruiz 602-789-1650
- California, Glendora – Citrus Valley Medical – Contact Lisa Regan 626-914-3295
- California, Palo Alto – Stanford University – Contact Anna Ramakrishnan 650-723-3391 (not yet enrolling)
- California, San Diego – SD URO-Research – Contact Patti Sanchez-Emery 619-299-6500
- Connecticut, Farmington – Women’s Health Specialty Care – Contact Madeline Vasquez 860-678-7300, ext. 15
- Florida, Boynton Beach – Visions Clinical Research – Contact Aneesa Mohamed 561-964-7880
- Florida, Bradenton – Manatee Medical Research – Contact Amy Boucher 941-792-0340, ext. 1328
- Florida, Daytona Beach – Atlantic Urological Associates – Contact Jeannie McMillan 386-239-8512
- Florida, Winter Haven – Winter Haven LLC – Contact Carita Thomas 877-762-2906
- Idaho, Meridian – Idaho Urologic Institute – Contact Shanna Vail 208-639-4938
- Indiana, Jeffersonville – Metropolitan Urology PSC – Contact Chris Dallas 812-206-8161
- Louisiana, Shreveport – Regional Urology LLC – Contact Leah or Connie Nalewaik 318-683-0411
- Maryland, Annapolis – Anne Arundel Urology, P.A. – Contact Elizabeth Dantonio 410-266-8049, ext. 143
- Michigan, Ann Arbor – Univ. of MI Health System, Dept. of Urology – Contact Jana Creps 734-764-9308 (not yet enrolling)
- Michigan, Grand Rapids – Female Pelvic Medicine and Urogynecology – Contact Beth Rogers 616-588-180
- Michigan, Kalamazoo – Beyer Research – Contact Lucy Pelletier 269-372-7800
- Michigan, Royal Oak – William Beaumont Hospital – Contact Ann Robinson 248-551-0804
- New York, Hyde Park – The Arthur Smith Institute for Urology – Contact Monica Johnson 516-734-8515
- New York, Poughkeepsie – Premier Medical Group of Hudson Valley PC – Contact Jeanie Loeffel 845-473-5002
- North Carolina, Raleigh – Associated Urologists of North Carolina – Contact Jan Vickerson 919-782-1255
- North Carolina, Raleigh – Wake Research Associates, LLC – Contact Dhara Vaghani 919-781-251
- North Carolina, Salisbury – PMG Research of Salisbury – Contact Stephenie Barnhardt 704-647-9913
- North Carolina, Winston Salem – PMG Research of Winston – Contact Sandy West 336-768-8062
- North Carolina, Winston Salem – Wake Forest Univ. Health Sciences – Contact Janet Shuping 336-716-2612 (not yet enrolling)
- Ohio, Cleveland – MetroHealth Medical Center – Contact Marilyn Alejandro-Rodriguez 216-778-5890 (not yet enrolling)
- South Carolina, Myrtle Beach – Carolina Urologic Research – Contact Kimberly McKenzie 843-286-0019
- Washington, Mountlake Terrace – Integrity Medical Research, LLC – Contact Somar Macek 425-275-0680
More centers will be added in the future. To find out more information about this research study, please go to www.clinicaltrials.gov.
New Research Study Seeks Women With IC & Pelvic Pain
Researchers at University Hospitals Case Medical Center in Cleveland, Ohio are currently seeking volunteers to participate in a research study to learn more about Interstitial Cystitis (IC) and Myofasicial Pelvic Pain (MPP).
Are you suffering from pain in your bladder or pelvic region? If so, you may be eligible to participate in our research study. Our goal is to learn potential causes and better diagnostic tools for these diseases.
Qualified participants must be female and are 18-80 years old:
- Have been diagnosed with IC
- And/ or have been diagnosed with MPP
- And/or have a family member that has been diagnosed with IC you both would like to participate
The study involves 2 - 3 study visits which take place in Cleveland, OH and approximately 10 hours of your time. Total compensation for completion of all study visits is $150 in gift cards.
Research is always voluntary!
If interested, please contact:
Interstitial Cystitis: Elucidation of Psychophysiologic and Autonomic Characteristics (ICEPAC)
Case Western Reserve University: School of Medicine
Funded by: National Institute of Diabetes and Digestive and Kidney Diseases
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.
- Efficacy Study of Adalimumab to Treat Interstitial Cystitis
- Intranasal Oxytocin for the Treatment of Pain Associated With Interstitial Cystitis
- Comparative Study Between Hyperbaric Therapy and Intravesical Dimethyl Sulfoxide Instillation for Interstitial Cystitis - ISRAEL
- Clinical Efficacy of Changing the InterStim® Parameters in Patients With Interstitial Cystitis/Painful Bladder Syndrome
- Placebo Controlled Study of Safety,Tolerability, and Efficacy of LiRIS in Women With Interstitial Cystitis, Followed by Open-label Extension
- Efficacy of Intravesical LP08 in Patients With Interstitial Cystitis/Painful Bladder Syndrome
- Safety Study of Single Intravesical Doses of TTI-1612 in Women With Interstitial Cystitis/Bladder Pain Syndrome
- Chronic Pelvic Pain Study of Individuals With Diagnoses or Symptoms of Interstitial Cystitis and/ or Chronic Prostatitis
- A Randomized Study Comparing Placebo and ASP3652 in the Treatment of Women With Bladder Pain Syndrome / Interstitial Cystitis (BPS/IC)
- The Safety and Efficacy of AF-219 in Female Subjects With Interstitial Cystitis /Bladder Pain Syndrome
- DMSO Efficacy in IC/PBS Patients During and After Treatment (ISRAEL)
- Linkage Analysis in Interstitial Cystitis
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.
University of Miami Miller School of Medicine Miami, FL
Principal Investigator: Thomas M. Hooton, MD
Contact: Gabriel Blaschke (305) 243-2576 firstname.lastname@example.org
University of Alabama at Birmingham Birmingham, AL
Principal Investigator: Timothy J. Ness, MD, Ph.D.
Contact: Beverly Corbitt (205) 934-3751 email@example.com
University of Michigan Ann Arbor, MI
Site Directors: Daniel J. Clauw, MD and Quentin Clemens, MD, MSCI
Contact: Megan Halvorson (734) 998-6839 firstname.lastname@example.org
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 email@example.com
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 firstname.lastname@example.org
Vivien Gardner (314) 996-8285 email@example.com
University of Iowa Iowa City, IA
Site Director: Karl Kreder, MD, MBA
Contact: Mary Eno (319) 384-9265 firstname.lastname@example.org
University of Washington Seattle, WA
Site Director: Dedra Buchwald, MD
Contact: T. J. Sundsvold (206) 616-4497 email@example.com
Stanford University Palo Alto, CA
Principal Investigator: Sean Mackey, MD, Ph.D.
Contact: Noorulain Noor (650) 724-0522 firstname.lastname@example.org
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 email@example.com
Jennifer Soh (310) 206-1757 firstname.lastname@example.org
UCPPN CENTERS (Studies have been completed)
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
Univ. of Colorado - Denver (MAPP) - Technology and Tissue Center - M. Scott Lucia MD
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
University of Iowa Hospitals (ICCRN) -
Karl Kreder, M.D. ,
Michael O’Donnell, M.D.
Contact: Mary Eno, R.N. - Research Coordinator at
Kelley O’Berry - Recruitment Coordinator at
University of Maryland (ICCRN) -
Toby Chai, M.D.,
Susan Keay, M.D.
Contact: Judith Murray, CCRC - Research Coordinator
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
The University of Mississippi Medical Center (CPCRN) -
Paige White, M.D.
Contact: (610) 984-5195
University of Rochester Medical Center (ICCRN) -
Robert Mayer, M.D. &
Edward M. Messing, M.D.
Contact: Elizabeth Smith, B.S. - Research Coordinator at
Kay Rust, R.N., M.S.N., F.N.P - Research Coordinator at
Cleveland Clinic (CPCRN) -
Daniel Shoskes, M.D.,
Contact: Donel Murphy (216) 445-7505
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
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
Kingston, Ontario, Canada (ICCRN) -
J. Curtis Nickel, M.D.,
Contact: Joe Downey, M.Sc., CCRP, (613) 533-2894
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?