Interstitial Cystitis Study at Boston Children's Hospital Recruiting to Identify Genetic Markers
by Editor ImmuneSupport.com
02-25-2007
About every 15 seconds a person in the U.S. is diagnosed with interstitial cystitis (IC) - a painful pelvic/urinary tract condition that is also frequently associated with Fibromyalgia, ME/CFS, and IBS.
``Studies have suggested that the condition may be genetic and passed down (or inherited) from one generation to the next,'' researchers at Boston Children's Hospital note.
And now they're recruiting IC patients - with a special emphasis on including younger patients age 8 and up - to ``compare different families' samples and medical information and determine which genetic factors may play a role in interstitial cystitis.''
One requirement for inclusion will be that the patient have a ``first degree relative'' (parent, brother/sister, or child) with IC symptoms.
What is Interstitial Cystitis and How Frequent is It in FM and ME/CFS?
Interstitial cystitis is a condition with no known cure. Symptoms tend to be as outlined in the ``Inclusion Criteria'' below.
It is common in both men and women, and frequently goes undiagnosed, owing partly to a lack of medical training in IC-related diagnosis/treatment training, and to a lack of public awareness.
Additionally, interstitial cystitis goes by several other names:
Painful bladder syndrome, Hypersensitive bladder syndrome, Chronic pelvic pain syndrome. According to recent journal articles, ``24.6 percent of IC patients exhibit symptoms of Fibromyalgia, compared with 3.2% of the general population,'' and there is a theory that ``IC might be a disease within the spectrum of chronic fatigue and pain syndromes.''
The Boston Childrens' Hospital project - ``Genetic Studies in Interstitial Cystitis'' - ClinicalTrials.gov number NCT00389142 - intends to ``fully describe the phenotype of interstitial cystitis.''
[A pheonotype is the pattern of genes that together manifest a trait that varies between individuals.] The study will recruit a group of patients in the United States and reportedly another in Bulgaria.
Criteria for Inclusion :
Males and females ages 8 and older
Urinary frequency - more than 1 time per hour, and/or
Dysuria (painful or difficult urination), and/or Pelvic, suprapubic, or abdominal pain - for 3 months or longer
Previously normal voiding pattern (normal retrograde voiding cystourethrogram if done).
A cystourethrogram is an examination of the bladder and lower urinary tract using a special form of X-ray called ``fluoroscopy'' and a contrast medium.
Nocturia (need to get up in the night to urinate)
Normal urinary stream (by history)
No evidence of active bacterial urinary tract infection (no pyuria, & negative urinary culture for last 3 months)
Must be first degree relative of someone with above symptoms.
Exclusion Criteria: *****************
Major structural/anatomical urinary tract abnormalities by ultrasound
Underlying inborn conditions
Severe constipation.
Location and Contact Information: **********************************
Children's Hospital, Boston, Massachusetts Program in Genomics/Harvard Neuromuscular Disease Project
Jordan Dimitrakov, MD, PhD, Principal Investigator
Please refer to study by ClinicalTrials.gov number NCT00389142
Health Authority: U.S. Institutional Review Board
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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
Thanks Betty for posting this :-)
"About every 15 seconds a person in the U.S. is diagnosed with interstitial cystitis (IC)"
I didnt realize there were that many with IC.
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
I contacted the Study administrator and family members do not have to be symptomatic. They are just looking to see if they can isolate a specific protein found in the urine of IC patients.
I'm thinking about doing this and hope atleast one of my family members will join me :-)
If I can save anyone from having the horrid hysto/cysto to confirm IC diagnosis, it will be worth it.
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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posted
Interesting...maybe I will take part and get my mother to also.
Posts: 240 | From MA | Registered: Nov 2006
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bettyg
Unregistered
posted
when i read this in celiac newsletter from scott, i thought of many of you who have discussed this here ... so wanted anyone interested be able to apply IF they chose to.
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