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Microsoft word - surveya.doc
Enter today’s date __________________(mm/year)
THE UNIVERSITY OF IOWA
Membranoproliferative Glomerulonephritis (MPGN)
Database Baseline Survey
Please answer the following questions to the best of
your ability. The survey is to be completed by the individual diagnosed
with MPGN (referred to as the Patient
throughout the survey), if the
Patient is age 18 or older. It may be completed by a guardian if the
individual with MPGN is less than 18 years of age.
Please note that some questions may not apply to you and your family.
For these items, please mark the N/A ("Not Applicable") answer choice. If you are unsure of an answer, check the D/K ("Don't Know”) answer
I. PATIENT INFORMATION
1. Patient's Name: ________________________________________________
a)___ Self b)___ Mother c)___ Father d) Other:_______________
4.1 Type of MPGN
: 1 2 3
(MPGN type 2 is now known as Dense Deposit Disease).
4.2 Was the MPGN diagnosed by biopsy? Yes no
4.3 Date of Diagnosis with MPGN _____________________mm/yyyy 4.4 Location of Hospital where biopsy was done.________________________
5. Which one of the following best describes the Patient’s
7. Please list all the Countries that the patient lived in 1 year prior to diagnosis with MPGN. a) ________________________________________________________________
If the patient lived in the US, please list all the states lived in the year prior to the diagnosis
8. What is the highest grade in school completed by the person filling out the survey
II. Family Medical History
– Please answer for blood relatives of patient only.
Please insert Y for yes
if the person has the disease; N for no
they do not have the disease; D/K for don’t know
If you leave a box blank we will assume it is a don’t know.
Diabetes type 1- juvenile diabetes, takes insulin only
Please indicate any cancers that your blood related family members have: ________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________ Please indicate any other diseases that blood related family members have: ________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________ If you had blood tested for Factor H deficiency or polymorphism, please indicate where that was done: ________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________
III. History of MPGN- Social and Environmental Factors
Please indicate whether the patient had any of the following events occur during the year
prior to the diagnosis of MPGN
the appropriate box.
Event Yes No
unusual chemicals, pesticides or processing plant wastes Frequent
unexplained fevers, colds, sore throats or ear infections Hospitalization
unexplained fevers, colds, sore throats or ear infections Known exposure to
blood that were higher than normal Less common
vaccines, ie, yellow fever- indicate below Major family life
change (marriage, birth, divorce, death) 65. Please provide additional information on any of the above events. ________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________
A. Please indicate the symptoms that first made the patient seek a Doctor’s
care for what turned out to be MPGN.
on a routine
are whitish/yellow deposits found on retinas in some patients with
MPGN type 2 or Dense Deposit Disease.
76. Please provide any additional information, ex. Creatinine levels, C3 values,
that you think might be important.
B. Please indicate the symptoms found by the doctor
when the patient went to
be seen by the doctor for what turned out to be MPGN.
85. Please add any additional information you feel might be important about the onset
of disease or what led you to get a biopsy. ____________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________
Please indicate whether any of the following medications or therapies were used to treat the patient following diagnosis
of MPGN by marking the appropriate box. Medication yes
enalapril,isinopril,cozaar Calcium Channel Blockers;
108. Other: Sometimes patients are started on a drug, for example Prednisone.
After several months it is not felt to work and a drug switch is made. If this has
happened, please note what drug was first used, any effects or non-effects,
medication changes and if that helped.
V. Course of MPGN- 118. What is the current health of the patient in relationship to MPGN?
1. _____Native kidney (one you are born with) working well 2. _____Worsening native kidney function 3. _____On dialysis 4. _____Working transplant 5. _____Failing transplant
119. Following diagnosis of MPGN, has the patient required dialysis or transplantation?
Yes____ No____ (If No, go to #167)
120. How long after the initial diagnosis with MPGN did renal failure occur?
dialysis started ______________(mm/yyyy) 121. If the patient has been on dialysis, or is currently on dialysis please indicate
the type and the reason, if any, for stopping below.
Hemodialysis Peritoneal Reason for stopping
121.6 Use this space for any comments about dialysis you feel might be helpful.
123. How long after being diagnosed with MPGN did the patient receive their first transplant? 0-1 yr___. 1-2 yrs.___ 2-3 yrs ___ 4-6 yrs___ 6-10yrs.___ Specify_____
124. How many transplants has the patient had?____________
125. Dates of transplant #1 Start date (mm/yyyy)_______________
End date (mm/yyyy)________________ 125a. Was the donated kidney: live or cadaveric kidney (please circle one) 125b. If known, please state relationship of donor to patient. ________________
126. Dates of Transplant #2 Start date(mm/yyyy)________________
End date (mm/yyyy)_________________ 126a. Was the donated kidney: live or cadaveric kidney (please circle one) 126b. If known, please state relationship of donor to patient. ________________
127. Did the Patient receive any treatment before or immediately following
transplant to prevent loss of the new kidney due to recurrence
Yes___ No____ If yes, please proceed to #128, if no go to #167
VI. B. Transplant- Medications following
VI.C. Transplantation – Complications following surgery
Please check any boxes that apply. Transplants #1 & #2
Please specify for each transplant:
164. Is transplant still working?
164a. Transplant #1 Yes No
164b. Transplant #2 Yes No
165. If no, what do you understand was the main reason for the loss?
165a. Transplant #1
165b. Transplant #2
166. Any additional factors you feel may have contributed to failure of the transplanted
167. The course of MPGN varies for each individual. For example
a timeline of a
patient’s disease course following diagnosis of MPGN may be:
In the space below, please provide a progression of your MPGN disease course,
including the approximate dates and events
. You don’t have to be exact. If you know C3 levels
, C3Nephritic Factors, Creatinine clearance values
at certain points of the
disease, please include those values as they are of interest to scientists.
168. Many people have suspicions about what caused MPGN and what may have made the disease better or worse. In the space below, please comment on any suspicions you may have. __________________________________________________________________________________________________________________________________________________________________________________________________________________ 169. Did you have any help from one of your health care providers (e.g., a nurse, doctor, other health care professional) in completing the questionnaire?
170. Would you like us to let you know if there are important research studies
feel you might be interested in? We would not share your name or information with the
researchers. We would give you the information and let you contact them.
171. Follow up is critical
to learning about the disease. Please indicate contact
information below. Thank you very much for your help
Personal Story and Call for a New Mission Group First, I would like to tell you how grateful I am that I found this community where I am among friends who I feel safe enough and will allow me to tell something of my story. It was the Junior year of my college career at Lynchburg College. It was not but a few weeks left of the Spring semester. Only one more year of college and I would take the
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