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Breaking News! NIDDK Dedicates $1,000,000 to fund IC Epidemiology Study

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  • Breaking News! NIDDK Dedicates $1,000,000 to fund IC Epidemiology Study

    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.
    Would you like to talk with someone about your IC struggles? The ICN now offers personal coaching sessions that include myself, Julie Beyer RD on the diet and Dr. Heather Howard on Sexuality. http://www.icnsales.com/icn-personal-coaching/

    Looking for books, magazines & reports on IC? Please visit the ICN Shop at: http://www.icnsales.com: Your ICN subscription & purchases in our shop support these message boards, chats and special events. BECOME AN ICN ANGEL TODAY!

    Please remember that the information on the ICN is provided with the understanding that ICN, its founder, staff, volunteers, and participants are not engaged in rendering medical or professional medical services. We cannot and do not give medical advice. Only your personal physician can do this for you.







  • #2
    WOOOOOOHOOOOOOOOO THIS IS GREAT!!!!!! AND ITS ABOUT TIME!
    IC Angel: Proudly supporting the Children and the Elderly with IC.


    E-Mail: [email protected]

    http://www.myspace.com/lilmiss200595


    Revelation 21:4
    "And he will wipe out every tear from their eyes, and death will be no more, neither will mourning nor outcry nor pain be anymore. The former things have passed away."

    Comment


    • #3
      Now that is some wonderful news! kissing
      Medicine taken daily or as needed:
      1. Heaprin and Marcaine rescue installment 1 to 3x daily as needed.
      2. MS.Cotin 100mg 3x daily
      3. MSIR 30mg 1 or 2 every 4-6hrs as needed for breakthrew pain.
      4. Fentanyl 100 mg Change every 48hrs.
      5. Gentamicin 80mg install after each rescue treatment
      5 Leviquin 500mg self start as needed.
      6. Klonopin 1 or 2 daily as needed.
      7. Prosed/DS as 1 every 6hrs as needed.





      I have IC, but IC doesn't have me anymore!

      Comment


      • #4
        testing!
        Would you like to talk with someone about your IC struggles? The ICN now offers personal coaching sessions that include myself, Julie Beyer RD on the diet and Dr. Heather Howard on Sexuality. http://www.icnsales.com/icn-personal-coaching/

        Looking for books, magazines & reports on IC? Please visit the ICN Shop at: http://www.icnsales.com: Your ICN subscription & purchases in our shop support these message boards, chats and special events. BECOME AN ICN ANGEL TODAY!

        Please remember that the information on the ICN is provided with the understanding that ICN, its founder, staff, volunteers, and participants are not engaged in rendering medical or professional medical services. We cannot and do not give medical advice. Only your personal physician can do this for you.






        Comment


        • #5
          testing
          Would you like to talk with someone about your IC struggles? The ICN now offers personal coaching sessions that include myself, Julie Beyer RD on the diet and Dr. Heather Howard on Sexuality. http://www.icnsales.com/icn-personal-coaching/

          Looking for books, magazines & reports on IC? Please visit the ICN Shop at: http://www.icnsales.com: Your ICN subscription & purchases in our shop support these message boards, chats and special events. BECOME AN ICN ANGEL TODAY!

          Please remember that the information on the ICN is provided with the understanding that ICN, its founder, staff, volunteers, and participants are not engaged in rendering medical or professional medical services. We cannot and do not give medical advice. Only your personal physician can do this for you.






          Comment


          • #6
            WONDERFUL NEWS!!!
            Tilly

            Comment


            • #7
              testing
              Would you like to talk with someone about your IC struggles? The ICN now offers personal coaching sessions that include myself, Julie Beyer RD on the diet and Dr. Heather Howard on Sexuality. http://www.icnsales.com/icn-personal-coaching/

              Looking for books, magazines & reports on IC? Please visit the ICN Shop at: http://www.icnsales.com: Your ICN subscription & purchases in our shop support these message boards, chats and special events. BECOME AN ICN ANGEL TODAY!

              Please remember that the information on the ICN is provided with the understanding that ICN, its founder, staff, volunteers, and participants are not engaged in rendering medical or professional medical services. We cannot and do not give medical advice. Only your personal physician can do this for you.






              Comment


              • #8
                wonderful news.
                Hang in there , There is hope.
                There is hope. Prayer works.

                Love, Debbie

                Comment


                • #9
                  WOW Jill, This is some wonderfull news.
                  Thanks so much.
                  Animals are very comforting when
                  pain & life gets you down...

                  Keep your head held high and don't let any thing bring you down.

                  Comment


                  • #10
                    WOW! Great news, very exciting!!
                    My story of healing and hope http://www.ic-network.com/patientstories/alexa.html

                    Comment


                    • #11
                      I am so glad to hear this news. Let's hope we get a cure soon!

                      Comment


                      • #12
                        Great, now we need to demand some of that Grant moneys should be spent by buying us all some talk show time.

                        I feel this would be the fair thing to do.
                        I wonder How others feel?

                        Jill, thank you! scream

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