Patient Survey

The mission of The NephCure Foundation is to support research seeking the causes and cures for the serious kidney conditions Nephrotic Syndrome (NS) and Focal Segmental Glomerulosclerosis (FSGS). We also offer many services to educate patients and their families about these diseases and new advances in research including new treatments. We need you to be counted in the NephCure family. By providing the information below you enlarge our community and motivate researchers to focus on these conditions. We can make more noise in our efforts to raise awareness if we have accurate numbers of all those affected and the greatest progress will be made when all patients have been counted. Please take a moment to complete this survey.

First name: *

Last name: *

Address

Street address: *

City: *

State: *

Country: *

Zip code: *

Home Phone: *

Cell Phone:

Email:

What is the name of the patient?: *

Patient Gender: *

Male

Female

What is your relationship to the patient?: * select...SelfParentSiblingSpouseGrandparentGuardianOther

Other patient relationship (if applicable):

Please describe "other" patient relationship if you chose "other" in the previous question.

Patient date of birth: *

MonthJanFebMarAprMayJunJulAugSepOctNovDec

Day12345678910111213141516171819202122232425262728293031

Year19001901190219031904190519061907190819091910191119121913191419151916191719181919192019211922192319241925192619271928192919301931193219331934193519361937193819391940194119421943194419451946194719481949195019511952195319541955195619571958195919601961196219631964196519661967196819691970197119721973197419751976197719781979198019811982198319841985198619871988198919901991199219931994199519961997199819992000200120022003200420052006200720082009201020112012201320142015

Current employer

Company name:

Position:

Has the patient served in the U.S. military?:

Yes

No

If yes, which branch: select...Air ForceArmyCoast GuardMarine CorpNavy

Ethnicity?: * select...CaucasianBlack or African AmericanHispanic/SpanishNative Hawaiian/Pacific IslanderAmerican Indian/Alaska NativeAsianOther

If other, please specify:

What is the name of your doctor/nephrologist?:

What is the name of your hospital?:

What is your diagnosis?: * select...FSGSNephrotic SyndromeMinimal Change DiseaseMembranous NephropathyOther

If other, please specify:

What caused the disease? :

What year was the patient diagnosed?:

Was a kidney biopsy performed on the patient?:

Yes

No

What year was the biopsy performed?:

What was the basis for diagnosis?: select...Physician diagnosisDNA (Gene) testingLaboratory testingSelf diagnosis

What is the patient's current condition?: select...In remission with therapiesIn remission without therapiesDisease is active

Please check box if applicable: select...In kidney failureOn dialysisAwaiting kidney transplant

If awaiting a kidney transplant:

Will this be your first kidney transplant?:

Yes

No

If no, how many kidney transplants have you had?:

What type of transplant have you had?:

Living

Cadaver

Is the transplant working?:

Yes

No

If the transplant is not working, is the disease back?:

Yes

No

Briefly describe the patient's current treatment protocol? (include name of medication & the dose you take):

Has the patient participated in any research studies?:

Yes

No

If yes, what is the name of the study or studies?:

How did you hear about the NephCure Foundation?:

Internet Search

Friend and/or Patient

Medical Professional

Facebook

Inspire.com

Media

Publication

How did you learn of this survey? (NephCure staff, searching website, medical professional):

Do you access NephSpace (online support community):

Yes

No

NephSpace is a safe space to share experiences with others affected by Nephrotic Syndrome and FSGS. Register for free TODAY to connect with families all over the world for support and inspiration.

Opt-ins:

Are you interested in...

Raising awareness or participating in advocacy?:

Yes

No

Information about our ongoing research efforts?:

Yes

No

Education materials? Please check which.:

FSGS

Nephrotic Syndrome

English

Spanish

NephCure's free Lunch and Learn Patient Seminars?:

Yes

No

NephCure's walks and other NephCure events?:

Yes

No

Volunteering for NephCure?:

Yes

No

Connecting with other families (local or national)?:

Yes

No

By initializing below, I agree to provide the above survey information to the Nephrotic Syndrome Rare Disease Clinical Research:

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