IC Disease

While this clinical trial is not currently open for enrollment, keep your eyes open for future news on researchers looking for study participants.  This clinical trial (ClinicalTrials.gov Identifier: NCT00823030) is to determine the amount of improvement in bladder function and pain relief with the administration of 2% alkalinized lidocaine in IC Disease patients.

Once researchers start actively recruiting IC Disease patients, they would like to have approximately 40 patients to properly complete their clincial trial.  This trial is sponsored by the North Shore Long Island Jewish Health System.

Inclusion Criteria:

• Male & female patients ages 18 - 80
• Must have a clinical diagnosis of IC Disease based on the National Institute of Diabetes, Digestive and Kidney Diseases (NIDKK) criteria.
• Written informed consent
• Able to understand and complete a VAS/GRA/modified IPSS assessment

Exclusion Criteria:

• Having a severely disabling concurrent medical condition
• A history of pelvic radiation therapy, tuberculous cystitis, neurologic disease affecting bladder function, bladder cancer, or carcinoma in situ, or urethral cancer
• Evidence of urethritis
• An allergy to lidocaine

Contact Information:

For further information on this clinical trial and to find out when researchers will be recruiting patients, contact:

• Amin S Herati, BA
  516-734-8570
  aherati@gmail.com

Here are some more clinical trials currently recruiting IC Disease patients.  Please make sure you read all of the inclusion and exclusion information and don’t get involved in one without first consulting your physician.

Catheter Analgesia Trial

The purpose of this clinical trial is to compare the utility of phenazopyridine HCl vs. placebo in reducing catheter-associated discomfort during the post-operative period in the gynecologic patient using mean VAS measurments.

Genetic Studies In IC Disease

The purpose of this clinical trial is to determine whether or not IC Disease is an inherited disease. The study will include IC Disease patients and their family members.

Linkage Analysis In IC Disease

The purpose of this clinical trial is to understand the basis of IC Disease and like conditions and to study symptoms and the disease as a whole.

Diagnostic Challenges for Male IC & CPPS Patients

The purpose of this study is to determine whether there is a link between IC Disease in men and CPPS (chronic prostatitis/chronic pelvic pain syndrome).

There is currently an ongoing clinical trial (ClinicalTrials.gov Identifier: NCT00733603) that is testing the effectiveness of physical therapy in treating women who have Interstitial Cystitis.  There have only been a handful of clinical trials conducted to test treatments for IC Disease.

In this clinical trial, there are two non-drug therapies being tested.  These include Myofascial Tissue Manipulation and Global Therapeutic Massage. Myofascial Tissue Manipulation is a kind of physical therapy that is designed to work on specific muscles and tissue layers in a particular part of the body. In this study, this treatment will focus on the areas around the pelvis and the pelvic floor. The treatment will involve the physical therapist’s use of hands and fingers to target specific muscles and tissues located within your pelvis, rectum, and/or vagina (the pelvic floor) as well as muscles and layers of tissue in your abdomen and legs.

Global Therapeutic Massage is a treatment ithat nvolves the physical therapist’s use of classic Western body massage techniques on the muscles of your arms, legs, hands, neck, shoulders, back, stomach, buttocks, and feet to create an overall feeling of well being.

If you are interested in learning more about this clinical trial, see the contact information below.

Contacts

Contact: Keith Mickelberg, RN, BSN at 215-573-6318 or email:

keithmic@mail.med.upenn.edu

Here is a list of current clinical trials that are recruiting patients with IC Disease.  If you are interested in taking part in any of these, please make sure you:

• Read all of the information and what is involved with participating in the trial.
• Let your doctor review the clinical trial information and confirm whether you should or should not take part.
• Realize that there is always some risk involved when taking part of a clinical trial.

Torrance, CA - Western Clinical Research, Inc.

This clinical trial is testing a possible new medication that may help relieve symptoms of IC Disease.

New London, CT - Coastal Connecticut Research, LLC

Purpose of this clinical trial is to evaluate the efficiency and safety of an investigational drug for treating IC Disease pain.

Peoria, Illinois - Speciality Care Research

Another clinical trial to test an approved drug to see how it works on IC Disease pain.

Las Vegas, Nevada - Sheldon Freedman, MD

This is a nine week clinical trial for men and women IC patients, ages 18 and over, to test a drug for IC treatment.

Austin, TX - Benchmark Research

This clinical trial is open to adult IC patients who will go through different tests and medication testing.

Mountlake Terrace, Washington - Integrity Medical Research

Participants of this trial will either be given an oral medication or will take a placebo to see if it helps their IC Disease symptoms.

I try to occasionally post about other illnesses besides those related to the bladder, so when I found the information for this clinical trial, I felt it was worth posting - especially since ME/CFS and IC Disease are linked. 

This clinical trial, Proteomics of Cerebrospinal Fluid in ME/CFS, is sponsored by Georgetown University and the National Institute of Environmental Health Sciences.

The purpose of the study is to:

• look for specific proteins that are believed to be found in the spinal fluid of ME/CFS patients
• look for increased cerebrospinal fluid pressure (pressure that helps the cerebrospinal fluid to move around the brain and the spinal cord), may be related with certain symptoms like headache, sleep problems, light headedness, increased pain, excessive tiredness (fatigue) even with minimal work and memory problems.

Criteria needed to be considered for enrollment:

• You must have one of the following:  ME/CFS, Fibromyalgia, Gulf War Syndrome, Multiple Chemical Sensitivity Syndrome, IBS, Interstitial Cystitis

Exclusion Criteria (per the Clinical Trial.gove website):

• You do not want to have a lumbar puncture performed.
• You have a severe physical impairment that does not permit lumbar puncture or completion of the remainder of the tests (e.g. severe scoliosis or curvature of the back).
• You have a medical condition with symptoms similar to Chronic Fatigue Syndrome such as regional pain syndromes, reflex sympathetic dystrophy, morbid obesity, autoimmune / inflammatory diseases, cardiopulmonary disorders), neurological disorders (e.g. seizures, dementia, degenerative disorders), uncontrolled endocrine or allergic diseases or, cancer.
• You have a severe psychiatric illness such as schizophrenia, substance abuse, major depression with previous suicidal attempts, gestures or ideas about committing suicide.
• You are mentally retarded or cannot understand this informed consent, cannot provide absolute willingness to have a lumbar puncture as part of this study, or are unable to complete the questionnaires and other studies that are part of this research project.
• You are in jail or prison.
• You are pregnant.
• You smoke more than 5 cigarettes per day. You will be allowed to taper your smoking before your participation in the actual study visit. This is an excellent opportunity to ask about our Smoking Cessation Programs.
• You drink or eat caffeine containing products with more than the equivalent of 2 cups of coffee. You will be allowed to taper your caffeine intake before the study visit.
• You have used narcotics or other illegal medications for more than 3 months. These will be discussed with Dr. Baraniuk.
• You have a positive HIV test, or blood, liver or kidney tests that are abnormal.
• You are participating only so you can be paid for taking part in this spinal tap study.

Contact Information:

If you would like to be considered for participation in the clinical trial, you can contact Murugan K Ravindran, MD at 202-687-8231. Email: cfsresearch@georgetown.edu, look4murugan@gmail.com, mkr33@georgetown.edu.

It looks as though there may be another use for Botox besides freezing people’s faces!  There is currently a clinical trial (click HERE to read more) that is studying the effectiveness of using Botox treatments to treat Interstitial Cystitis.  Botulinum toxin A causes muscles to relax by “inhibiting the acetylcholine release at the neuromuscular junction”.  Botox has been found to relieve pain in many of the different muscle spasm related conditions. 

In this clinical trial, researchers want to determine whether 100 units of botulinum toxin A will relieve bladder and pelvic pain in IC Disease patients.

For the inclusion criteria for this trial, visit the Clinical Trials website. 

There is a new research study being done that is looking for patients who suffer from CFS, Fibromyalgia, IC Disease or chronic pain to participate.  The study will be an Internet survey that will take a year to complete at different follow-up intervals.  The purpose of the survey is to study the effectiveness of alternative medicine and the interactions among stress and coping, pain, and treatment outcomes.

The survey, PROCAIM (Patient-Reported Outcomes from Complementary, Alternative, and Integrative Medicine), was developed under a grant to UCLA researchers from the National Center for Complementary and Alternative Medicine.  If you would like to enroll in the survey, follow these instructions:

• Go to the PROCAIM website at http://www.procaim.org.
• Register on the site as a new user.
• Select clinic name: Craigslist. 
• Read and sign the Consent Form.
• Once you enter your email address to sign the consent form, you will be able to start answering a series of questions.  You will then be sent email reminders at the time of each scheduled follow-up for one year.

 If you would like more information, you can contact Deborah Ackerman, Ph.D. at Deborah.Ackerman@ucla.edu.

There is a new IC study that is recruiting patients to study their sleep quality and Interstitial Cystitis symptoms.  A women’s health nurse practitioner with 10 years of experience treating IC patients and a doctoral student in nursing are asking for your participation in this innovative study.

The study is a 20 minute online questionnaire that is completely confidential.  Those who decide to participate in the study will be asked to answer several questions about:

• Interstitial Cystitis symptoms
• sleep habits
• demographic information

For this particular study, researchers are looking for women who:

• have a diagnosis of Interstitial Cystitis made by a specialist who performed a potassium sensitivity test or bladder hydrodistention.
• are between the ages of 30 to 60.

If you would like to participate in this study, please click the link below:

Sleep & IC Study

The University of Iowa will be recruiting patients for several IC Disease studies to determine if Interstitial Cystitis is a whole body condition.  Researchers will be trying to determine whether or not there are subtypes of Interstitial Cystitis and they will also be looking at systems of inflammatory regulation.

One of the main researchers on the study, Dr. Kreder, says that what they are referring to in this study by “subtypes” is by researching IC patients who also have other chronic conditions - Fibromyalgia, Chronic Fatigue Syndrome, and Irritable Bowel Syndrome.

The studies will also include researching:

• Pain mapping IC Disease
• Examining the hypothalamic pituitary-adrenal axis, which helps regulate temperature, the immune system, mood, sexuality, and energy, as well as reactions to stress and injury
• Examining brain pathways that may govern painful syndromes
• Examining how certain bladder factors may predispose someone to IC Disease

Researchers at the University of Alabama at Birmingham are still in need of women to participate in a National Institutes of Health sponsored study on pain and Interstitial Cystitis.

You may be eligible to participate in this study if you are:

• A woman between the ages of 19-45 with regular menstrual cycles
• Diagnosed with interstitial cystitis confirmed by cystoscopy
• Diagnosed for at least 6 months
• Not taking birth control OR taking monthly oral contraceptive
• Not pregnant or had a hysterectomy

If you meet the above qualifications and are selected to participate in this study, you will be asked to record your IC symptoms daily for four months. This study does not require a visit to Birmingham, but can be completed entirely by mail and over the phone.

Contact Information:

Phone: 205-934-7703
Email: womensresearch@ccc.uab.edu