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Topic Suggestion Description

Date submitted: December 18, 2012

Briefly describe a specific question, or set of related questions, about a health care test or treatment that this program should consider.
In patients with Polysytic Liver and Kidney Disease, what is the corrilation with also being high risk for devoloping life threatning Aneruisms.
Does your question include a comparison of different health care approaches? (If no, your topic will still be considered.)
yes
If yes, explain the specific technologies, devices, drugs, or interventions you would like to see compared:
what new medications can be used to inprove the formations of the dibilitating and painful cysts and reduce devoloping an Aneurism .
What patients or group(s) of patients does your question apply to? (Please include specific details such as age range, gender, coexisting diagnoses, and indications for therapy.)
Non gender spacific, between the ages of 21 and 40. Hoping to achieve a relief of symtoms as well as improve the severity of these diseases through current medical research.
Are there subgroups of patients that your question might apply to? (For example, an ethnic group, stage or severity of a disease.)
would like to see how effective the trial is especially within the family genetics. And see why many family members carry the gene while it misses others.
Describe the health-related benefits you are interested in. (For example, improvements in patient symptoms or problems from treatment or diagnosis.)
I'm looking for any improvement as of yet I have'nt been given any hope at all, only to here that it is terminal.
Describe any health-related risks, side effects, or harms that you are concerned about.
I am in constant pain and would love to have some relief of that symptom.

Appropriateness for EHC Program

Does your question include a health care drug, intervention, device, or technology available (or likely to be available) in the U.S.?
unsure
Which priority area(s) and population(s) does this topic apply to? (check all that apply)
EHC Priority Conditions (updated in 2008)
  • Cardiovascular disease, including stroke and hypertension
  • Functional limitations and disability
  • Peptic ulcer disease and dyspepsia
AHRQ Priority Populations
  • Low income groups
  • Minority groups
  • Women
  • Children
Federal Health Care Program
  • Medicaid
  • Medicare
  • Other

Importance

Describe why this topic is important.
I am 30 yrs old suffering from this. I have yet to be even given as much as a treatment option and also watch my mother suffer too. The worst of all my 22 year old brother passed away of the same and wasn't even yet aware of the genetic disease that we now have all had to be tested for. I never even new my brother was sick until too late and don't have any doctors that are even barelly aware of the risks.
What specifically motivated you to ask this question? (For example, you are developing a clinical guideline, working with a policy with large uncertainty about the appropriate approach, costly intervention, new research you have read, items in the media you may have seen, a clinical practice dilemma you know of, etc.)
I don't know where else to turn for the hope of this disease not ending my life.
Does your question represent uncertainty for clinicians and/or policy-makers? (For example, variations in clinical care, controversy in what constitutes appropriate clinical care, or a policy decision.)
no
If yes, please explain:

Potential Impact

How will an answer to your research question be used or help inform decisions for you or your group?
Will provide a treatment option I hope. Also to hopefully rase awareness for more people to ge tested earlier in their life.
Describe the timeframe in which an answer to your question is needed.
As soon as one is availible. I also would be willing to be studied.
Describe any health disparities, inequities, or impact on vulnerable populations your question applies to.
The fact that it is rare and genetic is a hard combination as to even know of the risks and or the signs. Low income families and poor health care reform have made it almost impossible for me to plan to far in the future. Plus due to it's eventual mortality , insurace companies are refusing to pay calling the condition pre-existing.

Nominator Information

Other Information About You: (optional)
Please choose a description that best describes your role or perspective: (you may select more than one category if appropriate)
  • Patient/Consumer
  • Continuous Quality Improvement Group
  • Researcher
Are you making a suggestion as an individual or on behalf of an organization?
Individual
Please tell us how you heard about the Effective Health Care Program
internet