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BREAKING NEWS!
NIDDK Dedicates $1,000,000 To Study Epidemiology of IC

January 26, 2004 - The NIDDK has released a new Request for Application (RFA DK-04-009) for a new epidemiology research study on interstitial cystitis (IC) and painful bladder syndrome (PBS). Previous epidemiological studies have provided conflicting results. The Held study, published in 1987, was the first population-based study of IC in the USA. It estimated that a half million (38/100,000) American women may have IC. In 1999, Dr. Gary Curhan published the results of his population study which estimated that perhaps as many as 700,000 (52-67/100,000) women in the US have IC. Most recently, Dr. C. Lowell Parsons suggested that 22% of all women in the USA may have IC, based upon research he has conducted using potassium sensitivity test.

Why the different results? The studies may have used different diagnostic criteria for IC and clearly used different research methods. One key weakness is that more than 90% of the participants studied were older, white women who were able to afford medical care. Thus, we don't know how common IC is in the general population, among minorities, among lower-income individuals who don't have access to medical care, among children and, of course, men. The NIDDK seeks to create new, balanced epidemiological information with this new RFA, which will dedicate $1,000,000 for the creation of a new study.

Specifically, the NIDDK hopes to:

  • Determine the prevalence of IC/PBS in the general population by age, sex and race/ethnic subgroups
  • Determine the risk factors for the onset of IC/PBS
  • Determine the extent of health care utilization for persons with IC/PBS
  • Determine the most frequently used therapies (including conventional and alternative)
  • Determine the related conditions to IC/PBS.
  • Determine a family history of IC/PBS.
  • Determine the long term symptom history of patients with IC/PBS

A considerable part of this grant has to focus on finding a research method that will avoid the bias and/or limitations of past studies. The researcher who receives the grant will be developing a new population sampling strategy, as well as the development of new questionnaires to be used in the study. For example, a new questionnaire to help rate pain in IC patients may be required. This is no small burden.

In the Fall of 2003, the NIDDK convened a special meeting of the IC Epidemiology Task Force to study these issues and suggest future research.(The report from this meeting is available on-line). One key lesson came from Dr. William Reeves, who discussed Chronic Fatigue Syndrome epidemiology studies. In the early 1990's, most CFS studies were based in clinics and studied white women in their 40's and 50's who were in middle to upper income. When the Centers for Disease Control conducted community studies, they found that CFS was twice as common in the minority population. We don't know if this is the same for IC. We should know this.

Researchers interested in applying for this grant must have their applications in by March 22, 2004. Applications will be reviewed from summer to Fall 2004, with a start date of September 30, 2004. Awards will be made based upon the scientific merit of the proposal submitted and the availability of funds at the time.