Briefly describe a specific question, or set of related questions, about a health care test or treatment that this program should consider.

Sarcoidosis. An inflammatory disease that affects many parts of the body. The doctors say that it is a 'rare' disease that slipped through the cracks when it came to research. They tell us that it is 'rare' and that it affects mainly dark-skinned people - there are three in our family that has been diagnosed with this disease: my son, who is fairly dark (meaning he tans very easy), and two nieces who are fair. All three are having different treatments, but my son and one of the girls are being treated with predisone, which is fairly effective. But what are the lasting effects? With my son, the onset is usually with high calcium readings. He is constantly bothered with kidney stones. At one time, they he had 12 stones lasered and there was more in his body and this was after he had passed several smaller ones. I suppose my question is - is there ever going to be a research and possible answer to why.

Does your question include a comparison of different health care approaches? (If no, your topic will still be considered.)

no

If yes, explain the specific technologies, devices, drugs, or interventions you would like to see compared:

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.)

Not sure what age group. My son was diagnose in his early 40s, although looking back, I'm sure it went undiagnosed for several years. He started have problems with kidney stones at about 19-20 years old. It has affected his lungs, kidneys, overall health.

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.)

Describe any health-related risks, side effects, or harms that you are concerned about.

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.?

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
• Pulmonary disease/asthma

AHRQ Priority Populations

None

Federal Health Care Program

None

Importance

Describe why this topic is important.

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.)

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?

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.

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)

Are you making a suggestion as an individual or on behalf of an organization?

Please tell us how you heard about the Effective Health Care Program