INFO4PI - Survey

The questionnaire below is designed to provide the PI community with statistical data in order to help formulate plans to address Primary Immunodeficiencies. The JMF has existing collaborations with several governmental health agencies including the CDC and NIH, as well as government health departments in Europe, South America and Canada. We hope to compile as much information as possible about PI so that we can most effectively promote awareness of PI diseases and help to direct the research agenda, then researchers can focus their energies on where they are needed most to provide improved treatments, and possibly even cures.

1) How did you learn of INFO4PI? Please mark all that apply.

	Television
	Radio
	Newspaper/Magazine
	I was referred to the site by another person
	I was linked here from another site. (Which site?)

	I was just surfing
	I looked up a related keyword and a search engine found you
	I saw it on printed material (a brochure or an ad)
	Other

2) How would you best describe yourself?

	A primary care physician
	An immunology specialist
	A hematology specialist
	An infectious disease specialist
	A pulmonary specialist
	I have already been diagnosed with PI
	A friend, family of patient
	I think I may have PI
	Other

3) Please provide information about the patient that has already been diagnosed with PI:

Patient's Exact Diagnosis

Patient's Date of Birth

Patient's Ethnic Background

	Caucasion
	African American
	Hispanic
	Asian
	Pacific Islander
	Native American
	Other

Is the patient seeing an immunologist?

Yes No

If not, please indicate other.

Is the patient currently receiving IVIG treatments?

Yes No

If so, please provide the brand or manufacturers name.

How many times/ how often has the patient been hospitalized for a PI related illness?

What illness(es)?

Does the patient have any other major related disorders?

4) Below are the 10 Warning Signs of Primary Immunodeficiency.
Please check any that apply to you.

	Four or more new ear infections within 1 year
	Two or more serious sinus infections within 1 year
	Two or more months on antibiotics with little effect
	Two or more cases of pneumonia within 1 year
	Failure of an infant to gain weight or grow normally
	Recurrent, deep skin or organ abscesses
	Persistent thrush in mouth or elsewhere on skin, after age 1
	Need for intravenous antibiotics to clear infections
	Two or more deep-seated infections
	A family history of Primary Immunodeficiency

	If someone you know is affected by two or more of the following signs, speak to your doctor about the possible presence of Primary Immunodeficiency.

5) We welcome your comments or suggestions. If you would like to contact us, please write to
us in the message box provided. If your message requires a response, please include your
contact information.

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