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NIDDK Announces New Round of IC Research Funding

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  • NIDDK Announces New Round of IC Research Funding

    When Phil Hanno MD stated during the 2010 AUA meeting that the $100 million dollars invested IC research money to date had yet to provide fruitful results, he wasn't exaggerating. There are still key things that we don't understand about IC, such as why do IC patients often struggle with IBS and a host of other related conditions.

    Blame can be laid at several doorsteps. Critics of previous NIDDK studies suggest that the diagnostic criteria that they used was too stringent and selected only the most severe cases of IC to participate. The challenge, of course, is that more severe cases of IC are harder to treat and may not respond well to therapies targeted for more mild disease states.

    One of the critical debates which certainly held back research was whether IC is just a bladder condition or is it a systemic condition? The arguments and politicking which occurred over this simple question probably held back the IC research movement for years.

    And, of course, having a more "open" collaborative team approach took years to happen. In the early days (1980's - 1990's), IC decision makers were a select few who were, perhaps, not receptive to more diverse viewpoints and were fiercely defensive of their positions. I have certainly talked with several researchers who felt ignored if not disdained or publicly ridiculed for daring to think outside of the box. I witnessed the often public infighting that occurred between researchers at various meetings. The "conservatives" vs. the "liberals" doesn't only occur in politics, but also in the medical community. (FYI - The ICN represents the liberal side to the patient support community while the ICA represents a more conservative viewpoint).

    Thus, the announcement that the NIDDK was funding a new round of IC research a few days was initially met with skepticism but when you take a closer look at the proposal, it's clear that the NIDDK is humble, willing to admit past mistakes and ready to explore new, fresh concepts in IC and pelvic pain.

    The RFA announced that one year "seed" studies will be funded for a maximum of $350,000 per research group. The emphasis is clearly placed on team work and collaboration. They seek multidisciplinary groups not only from traditional university research centers, but also small businesses, non-profits and even international groups.

    What questions are they seeking new, novel approaches for?? Their research priorities are fascinating and, in some cases, finally focusing on the specific patient experiences.
    #1 - How might new or enhanced minimally invasive methods be employed to better assess bladder and lower urinary tract function in normal versus disease states? - Obviously they seek new testing methods that will be less traumatic to the patient than, say, a hydrodistention, urodynamics, etc. etc.

    #2 - How might novel approaches for structural and/or functional imaging of the pelvis, urogenital floor, and abdomen be used to identify anatomical features associated with symptom profiles? - Wouldn't it be amazing if they developing a new imaging test (i.e. xray, catscan, sonogram) that could assess the number of hunner's ulcers and/or degree of irritation/inflammation in the bladder wall?

    3. What is the biological basis of symptom flare and remission, as well as associated physiology and risk factors? - Can I hear a "hallelujah" from my readers. OMG, finally someone is interested in exploring how and why flares occur though, clearly, we know that foods and hormones are significant triggers. I hope that this team of researchers will "listen" the many wisdoms and insights offered by patients.

    4. What is the relationship between acute, chronic, or latent infection and the predisposition to development of IC/PBS symptoms? - What a can of worms this question has been over the past fifteen years. From chronic, low grade bladder infections to lyme disease and/or chlamydia, there has been significant conjecture and debate but very little in the way of validated studies which demonstrate the role that infection plays in IC, if any. What we do know is that patients rarely test positive for infection using traditional urine culturing techniques nor is bacteria normally associated with flares.

    5. What is the contribution of pain pathways or alterations in neuronal factors to changes in pain profiles and perceptions observed in patients? - I am loving this research priority because of the ample research that demonstrates that if the bowel becomes irritated, the bladder also shows signs of irritation and pain. And, of course, any patient with a wicked case of IC and vulvodynia can't help but wonder if nerves in the bladder and/or pelvis is the linkage. This is where I would put my $$.

    6. Is there a contribution of gender specific characteristics and pathophysiology to IC/PBS? Errr.... I'm thinking this is in support of hormonal connections and how hormone fluctuations in women appear to trigger flares... and yet we must wonder if hormones in men with IC also play a role. I don't think anyone has ever explored this before and it should yield fascinating research studies.

    7. What are the pathological relationships between IC/PBS and other urologic disorders characterized by the presence of LUTS and how does this inform directly on our understanding of IC/PBS? How does IC differ from overactive bladder? Some compelling physical findings and, more importantly, differences would certainly aid in more prompt diagnosis and treatment.

    8. How does the physiology of healthy urologic and non-urologic systems and processes compare and contrast to that seen in urologic and non-urologic systems in IC/PBS patients or patient-derived biological samples?

    9. What are the underlying physiological and pathological mechanisms that link IC/PBS with co-morbid disorders including fibromyalgia, chronic fatigue syndrome, irritable bowel syndrome, vulvodynia, chronic prostatitis/chronic pelvic pain syndrome, temporomandibular joint disorder, and/or migraine headache?

    10. How may clinical findings be further assessed through basic research studies, including in model organisms?

    Applications from research teams will be accepted through mid April. I strongly encourage you to read the RFA directly to see just how your government looks at IC and funding research studies.

    I like this clearly humble change of thinking from the NIDDK. The exploration of new viewpoints, new models and, perhaps most importantly, new researchers who can bring a fresh eye and viewpoint to this most puzzling condition is exactly what we need!!

    Jill O.
    Last edited by icnmgrjill; 02-09-2011, 02:27 PM.
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  • #2
    This is very exciting! Any new discovery would be wonderful but I like #5 and #9 and of course an easier way to diagnose it. Wouldn't it be great if they finally found the link between so many of these disorders and IC. And maybe one cure would fix them all???? Now thats a thought. Maybe I am hoping for too much but still!

    Gelnique for frequency/urgency - works great
    Macrobid after sex
    Prilosec, continuous birth control pills
    synthroid .088mg, mucinex-d, restasis

    Supplements: Desert Harvest Aloe vera, Cysta-q, prelief, magnesium and calcium, Vit D, flaxseed oil

    Diag Mild IC Jan 11 but have had symptoms for 25 years. Also have GERD, TMJ, IBS-C, chronic dry eye syndrome, hashimotos thyroiditis, non-allergic rhinitis.

    IC Diet Link:
    AUA 2011 Guidelines to diagnosing and treating IC overview-
    AUA 2011 Guidelines to diagnosing and treating IC PDF:
    Great treatment flowchart on page 19 of the pdf


    • #3
      Yes, very exciting news indeed!

      "Where there is hope there can be faith. Where there is faith, miracles can occur."


      • #4
        Hi Jill,

        Also, thanks for all your thoughts and insight into all of this. It's very much appreciated!

        "Where there is hope there can be faith. Where there is faith, miracles can occur."


        • #5
          It's comforting to know the research will be moving in different directions. Thank you for the update.

          Warm hugs,
          Stay safe

          Elmiron Eye Disease Information Center -
          Elmiron Eye Disease Fact Sheet (Downloadable) -

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          Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

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          Diet list:

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          I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

          Anyone who says something is foolproof hasn't met a determined fool


          • #6
            This sounds very exciting, and hope they move in the right direction. The research questions are certainly what many have asked. We will all keep our fingers, toes and legs crossed.