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Questionnaire - updated 8.2006.doc

HBDI FAMILY RESOURCE QUESTIONNAIRE
FOR THE GENETICS OF TYPE 1 DIABETES
Section I: Contact Information
Primary Family Contact (the person filling out this questionnaire):
Name (First, Last):
, agree to release the enclosed information to the HBDI.
HBDI may release my coded, anonymous information to approved diabetes researchers.

The information in this questionnaire is valuable to research only if it is exact and recorded
neatly. Please type or print wherever possible.

Signature Date
Section II: HBDI Family Profiles
Primary Family Profile
Instructions: Please complete the tables on pages 2-6 that ask questions about your immediate family, your maternal family (mother’s parents and siblings), your paternal family (father’s parents and siblings) and members of your immediate family who have children with diabetes. Please only record family members who are related by blood (for example, members of the family who are adopted do not need to be mentioned). We are interested in information about all blood relatives. Please summarize your family history below: Number of members in your primary family profile (to be outlined on page 3): Number of parents with Type 1 diabetes in the primary family profile: Number of children with Type 1 diabetes in the primary family profile: Most of the families associated with the HBDI were originally recruited from 1988 to 1993, a nd participants defined as “children” in your family may now have children of their own. Information about grandchildren may be provided below. An adult child who has children may request or be asked to complete an additional questionnaire in which they are characterized as a parent rather than a child. Do any of the adult children in your family have children? If so, please list the grandchild, whether or not they have diabetes and parent’s contact information. Please list additional grandchildren on the back of this form or attach an additional sheet if necessary. If there are a large number of grandchildren in your family and completion of this information is too time consuming, please focus on the children of any diabetics in the family and any grandchildren diagnosed with diabetes. Primary Family Profile
Current Diabetes
Diabetes Status
Treatment
Birth date
(Please
(Please check all
Diabetes
Age Insulin
Full Name (First, Last)
Sex (mm/dd/yy) Yes or No
check one)
that apply)
Diagnosis First Used
*Gestational diabetes is a type of diabetes that occurs only during pregnancy. **Please use the back of this sheet or attach additional pages if more space is needed. Mother’s Family – Maternal
Current Diabetes
Treatment
Birth date
Diabetes Status
(Please check all
Age at Onset
Age Insulin First
Full Name (First, Last)
Sex (mm/dd/yy)
(Please check one)
that apply)
of Diabetes
*Gestational diabetes is a type of diabetes that occurs only during pregnancy. **Please use the back of this sheet or attach additional pages if more space is needed. Father’s Family – Paternal
Current Diabetes
Treatment
Birth date
Diabetes Status
(Please check all
Age at Onset
Age Insulin First
Full Name (First, Last)
Sex (mm/dd/yy)
(Please check one)
that apply)
of Diabetes
*Gestational diabetes is a type of diabetes that occurs only during pregnancy. **Please use the back of this sheet or attach additional pages if more space is needed.
Section III. Parents’ and Grandparents’ Ethnic Origins and Country of Birth
Please find your ethnic origin code numbers and insert in the family table below:
Ethnic Origin Code Number
Ethnic Origin
African American, not of Hispanic Origin Family Table – Maternal
“Mother’s Family” Ethnic and Country Origin
Name

Ethnic Origin Code(s) #
City/Country of Birth
Family Table – Paternal
“Father’s Family” Ethnic and Country Origin
Name

Ethnic Origin Code(s) #
City/Country of Birth
Section IV. Family Medical History
Instructions: Please include information about yourself and your family members in the following tables. Please include name and year of birth to help us identify you or your family member. 1. Do you have multiple births in your immediate family (as detailed on page 4)? If so, please check type and complete the table below for each member of multiple birth groups: 2. Was the onset of diabetes in your family members preceded by a disease such as the flu, measles, rubella, mumps, chicken pox, etc. or by vaccination? If so, please list the family member and the disease or vaccination. 3. Do any members of your immediate family 4. have any of the diseases listed below? If so, please list the family member(s), check if they have diabetes or not and check all the disease(s) that apply. q Graves’ Disease (hyperthyroid) q Graves’ Disease (hyperthyroid) For each disease listed above, please indicate the disease, age at diagnosis (dx) and the name and dose of medications taken for that disease (if known). Please list the medication name(s) as written on the medication vial. 5. Has a doctor ever told any members of your family that they have diabetic retinopathy (eye disease)? If so, please check all diagnoses that apply and provide age of diagnosis (dx) for each condition checked. 6. Have any members of your family had surgery to control the progression of retinopathy? If so, please specify type of surgery, number of surgeries and approximate date of each surgery. 7. Do any members of your family experience complete or partial blindness in either eye? If so, please specify whether blindness is partial or complete in the right, left or both eyes and age at diagnosis (dx). 8. Has a doctor ever told any members of your family that they have diabetic neuropathy (nerve disease)? If so, please specify type(s) of neuropathy, age diagnosed and medications taken. 9. Have any members of your family had urine albumin tests for nephropathy (kidney disease)? If so, please specify if the result was positive or negative and details concerning date of detection and albumin level. 10. Has a doctor ever told any members of your family that they have a kidney problem as a result of their diabetes? If so, please check all conditions that apply for each member of your family. 11. Have any members of your family had heart, liver, pancreas or islet cell transplants? If so, please specify type and number of transplant and approximate date of each transplant. 12. Have any diabetic members of your family had a surgical amputation (resulting from diabetes)? If so, please indicate the extremity removed and date of surgery. 13. Has a doctor ever told any members of your family that they have any of the following conditions? If so, please check whether this person has diabetes, all conditions that apply and age at diagnosis. 14. Do you have family members with diabetes, who have been insulin dependent for 20 years or more, without being diagnosed with any complications of diabetes? If so, please indicate the number of years that they have had diabetes without complications. 15. Is your family involved in a research project, other than the HBDI Type 1 Diabetes program? If so, please indicate the title of the research project and the name and affiliation of the principle investigator. Affiliation (i.e., university or organization) 16. Do any members of your family take any medications not already mentioned? For example, are any members of your family taking Angiotensin Converting Enzyme (ACE) Inhibitors (i.e., benazepril [Lotensin], captopril [Capoten], enalapril [Vasotec], fosinopril [Monopril], lisinopril [Prinivil, Zestril], moexipril [Univasc], perindopril [Aceon], quinapril [Accupril], ramipril [Altace] or trandolapril [Mavik]) to control high blood pressure, heart disease or kidney disease? If so, please list medication, dosage, the year when the medication was first prescribed (if known) and the medical condition for which the medication was prescribed (i.e., high blood pressure). Please copy the name of your medication directly from your medicine vial. 20. Please use this space for any additional information about your family that you want to share with HBDI and our researchers.
21. Please provide contact information for your family and/or diabetes physician(s). If each member of your family has different physicians and/or specialists who treat complications of diabetes, please attach a list of physicians/specialists. Other, please specify: ___________________ Other, please specify: ___________________ HUMAN BIOLOGICAL DATA INTERCHANGE
A program of the National Disease Research Interchange
Combined Effort of the
Juvenile Diabetes Foundation International
National Disease Research Interchange
Coriell Medical Institute for Research
Upon receipt of this completed questionnaire, your family data will be coded for anonymity
and included in the "Human Biological Data Interchange" database. Should a researcher
request your family’s participation in his/her research project, an HBDI coordinator will
contact your family to discuss the details of your further participation.
HBDI's participation in this effort is limited to collecting the completed questionnaires and to
serving as a coordinator between your family and the researcher. Further participation
could include verification of data, additional questions, authorization for the release of your
medical records or the donation of small amounts of blood.


I understand that all my family data will be coded and anonymous and will be kept
confidential. I agree that the data from my family may be used to help research projects
aimed at the study of human disease, in particular Type 1 diabetes. My family and I agree to
release the enclosed information to HBDI, who may release it to a researcher while keeping
it coded, anonymous and confidential.

Signature of Authorized Adult Family Representative
Printed Signature of Authorized Adult Family Representative
Thank you for your cooperation in completing this questionnaire. Please return to
NDRI/HBDI, 1628 John F. Kennedy Boulevard, 8 Penn Center, 8th Floor, Philadelphia,
Pennsylvania, USA 19103. For more information, please telephone the office of NDRI/HBDI
at (800) 222-NDRI or (215) 557-7361.

Source: http://ndriresource.org/SiteData/docs/HBDIQuesti/664950721d17ee09/HBDI_Questionnaire_08_16_06.pdf

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