The entire spectrum surrounding syringomyelia in adults...source, effects, therapies, drugs, options for patients, training for med professionals, etc.

Briefly describe a specific question, or set of related questions, about a health care test or treatment that this program should consider.: The entire spectrum surrounding syringomyelia in adults...source, effects, therapies, drugs, options for patients, training for med professionals, etc.
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's available for syringomyelia sufferers. Are medical professional trained on the topic.
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.): Mainly adults, but it effect all groups
Are there subgroups of patients that your question might apply to? (For example, an ethnic group, stage or severity of a disease.)
Describe the health-related benefits you are interested in. (For example, improvements in patient symptoms or problems from treatment or diagnosis.): Lond-term therapies, living with the problem, best meds, best options for help, more doctors familiar with the problem of syringomyelia in adults
Describe any health-related risks, side effects, or harms that you are concerned about.: Paralysis, disability, chronic pain, incontinence, impotency, depression, etc.

Does your question include a health care drug, intervention, device, or technology available (or likely to be available) in the U.S.?

yes

Which priority area(s) and population(s) does this topic apply to? (check all that apply)

EHC Priority Conditions (updated in 2008)

AHRQ Priority Populations

Low income groups
Minority groups
Women
Children
Elderly
Individuals with special health care needs, including individuals with disabilities or who need chronic care or end-of-life health care

Federal Health Care Program

Describe why this topic is important.: Most health care professionals are not familiar or well-versed on syringomyelia in adults. It is a progressive disease that cause chronic disabiling pain and can end in paralysis.
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.): My husband is a syringomyelia sufferer, luckily being monitired by the Barrows clinic in Arizona.
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.)
If yes, please explain:

How will an answer to your research question be used or help inform decisions for you or your group?: Education more professionals. Provide more options for treatment. Provide more optimisic outcome to patients
Describe the timeframe in which an answer to your question is needed.
Describe any health disparities, inequities, or impact on vulnerable populations your question applies to.

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): Education more professionals. Provide more options for treatment. Provide more optimisic outcome to patients

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

Effective Health Care Program