|
subjectkey |
GUID |
|
Required |
The NDAR Global Unique Identifier (GUID) for research subject |
NDAR*
|
|
|
|
src_subject_id |
String |
20
|
Required |
Subject ID how it's defined in lab/project |
|
|
hcpa_id, subject_id |
|
interview_date |
Date |
|
Required |
Date on which the interview/genetic test/sampling/imaging/biospecimen was completed. MM/DD/YYYY |
|
|
date_ctq, v2_ctq_date |
|
interview_age |
Integer |
|
Required |
Age in months at the time of the interview/test/sampling/imaging. |
0::1440
|
Age is rounded to chronological month. If the research participant is 15-days-old at time of interview, the appropriate value would be 0 months. If the participant is 16-days-old, the value would be 1 month.
|
v2_ctq_age |
|
sex |
String |
20
|
Required |
Sex of subject at birth |
M;F; O; NR
|
M = Male; F = Female; O=Other; NR = Not reported
|
gender, sex |
Query
|
hysterec |
Integer |
|
Recommended |
hysterectomy |
|
0=No; 1=Yes; -7=Refused; 888=N/A; 999=missing data
|
mchq_1 |
Query
|
hystage |
Integer |
|
Recommended |
age at hysterectomy |
|
888=N/A; 999=missing data
|
mchq_2 |
Query
|
mchq_3 |
Integer |
|
Recommended |
Removal of one or both ovaries? |
1;2; 888; 999
|
1=Yes; 2=No; 888=N/A; 999=missing data
|
|
Query
|
mchq_4 |
Integer |
|
Recommended |
Removal of one or both ovaries - Age of Surgery |
1::100; 888; 999
|
888=N/A; 999=missing data
|
|
Query
|
mchq_5 |
Integer |
|
Recommended |
Polycystic Ovary Disease (Stein-Leventhal Syndrome) |
|
1=Yes; 2=No; 888=N/A; 999=missing data
|
gynecological_hist_4a |
Query
|
mchq_6 |
Integer |
|
Recommended |
Polycystic Ovary Disease (Stein-Leventhal Syndrome) - Age of Onset |
1::100; 888; 999
|
888=N/A; 999=missing data
|
|
Query
|
mchq_7 |
Integer |
|
Recommended |
Abnormal pap smear? |
1;2; 888; 999
|
1=Yes; 2=No; 888=N/A; 999=missing data
|
|
Query
|
mchq_8 |
Integer |
|
Recommended |
Abnormal pap smear - Age of Onset |
1::100; 888; 999
|
888=N/A; 999=missing data
|
|
Query
|
endomsis |
Integer |
|
Recommended |
endometriosis |
|
0=No; 1=Yes; -7=Refused; 888=N/A; 999=missing data
|
mchq_9 |
Query
|
mchq_10 |
Integer |
|
Recommended |
Endometriosis - Age of Onset |
1::100; 888; 999
|
888=N/A; 999=missing data
|
|
Query
|
mchq_11 |
Integer |
|
Recommended |
Pelvic Inflammatory Disease (infection of your womb tubes)? |
1;2; 888; 999
|
1=Yes; 2=No; 888=N/A; 999=missing data
|
|
Query
|
mchq_12 |
Integer |
|
Recommended |
Pelvic Inflammatory Disease (infection of your womb tubes) - Age of Onset |
1::100; 888; 999
|
888=N/A; 999=missing data
|
|
Query
|
mchq_13 |
Integer |
|
Recommended |
Amenorrhea (? 3 months without a period when not pregnant)? |
|
1=Yes; 2=No; 888=N/A; 999=missing data
|
gynecological_hist_4c |
Query
|
mchq_14 |
Integer |
|
Recommended |
Amenorrhea (? 3 months without a period when not pregnant) - Age of Onset |
1::100; 888; 999
|
888=N/A; 999=missing data
|
|
|
scq_23_sp |
String |
100
|
Recommended |
Specify any other gynecological problem |
|
|
mchq_15 |
Query
|
mchq_16 |
Integer |
|
Recommended |
Other Gynecological condition - Age of Onset |
1::100; 888; 999
|
888=N/A; 999=missing data
|
|
Query
|
mchq_17 |
Integer |
|
Recommended |
Do you have regular menstrual cycles? |
1;2; 888; 999
|
1=Yes; 2=No; 888=N/A; 999=missing data
|
mstrl2 |
|
mchq_18 |
String |
500
|
Recommended |
Do you have regular menstrual cycles. If no, explain |
|
|
mstrl2_reason |
Query
|
femenst |
Float |
|
Recommended |
Age (in years) at First Menstrual Period |
1::100; 888; 999
|
888=N/A; 999=missing data
|
gynecological_hist_9, mchq_19, mstrl2_age |
Query
|
mchq_20 |
Integer |
|
Recommended |
At what age did your mother have her very first period? |
1::100; 888; 999
|
888=N/A; 999=missing data
|
|
Query
|
mchq_21 |
Integer |
|
Recommended |
About how long is your entire cycle? |
1; 2; 3
|
1= less than every 25 days; 2= between 25-35 days; 3= more than every 35 days
|
mstrl2_cycle |
|
mchq_23 |
Date |
|
Recommended |
When was the previous menstrual period (before the last menstrual period |
|
|
|
Query
|
mchq_24 |
Integer |
|
Recommended |
Do you remember when you first started developing breasts (age)? |
1::100; 888; 999
|
888=N/A; 999=missing data
|
|
Query
|
mchq_25 |
Integer |
|
Recommended |
If you are not having regular periods: At what age did your periods become irregular |
1::100; 888; 999
|
888=N/A; 999=missing data
|
|
Query
|
mchq_26 |
Integer |
|
Recommended |
If you are not getting your periods: at what age did they stop |
1::100; 888; 999
|
888=N/A; 999=missing data
|
|
Query
|
mchq_27 |
Integer |
|
Recommended |
If your periods were irregular before the age of 15, how many periods per year on average have you had from the age at your first period to 15 years |
0 :: 1260; 888; 999
|
888=N/A; 999=missing data
|
|
Query
|
mchq_28 |
Integer |
|
Recommended |
If your periods were irregular during ages 16-18, how many periods per year on average have you had from 16-18 years old |
0 :: 1260; 888; 999
|
888=N/A; 999=missing data
|
|
Query
|
mchq_29 |
Integer |
|
Recommended |
If your periods were irregular during ages 19-21, how many periods per year on average have you had from 19-21 years old |
0 :: 1260; 888; 999
|
888=N/A; 999=missing data
|
|
Query
|
mchq_30 |
Integer |
|
Recommended |
If your periods were irregular during ages 22-25, how many periods per year on average have you had from 22-25 years old |
0 :: 1260; 888; 999
|
888=N/A; 999=missing data
|
|
|
mchq_31 |
String |
100
|
Recommended |
What kind of sports activities (team or solo) are you engaged in? |
|
|
|
Query
|
mchq_32 |
Integer |
|
Recommended |
How many hours per week do you typically spend on this activity? |
0 :: 200; 888; 999
|
888=N/A; 999=missing data
|
|
Query
|
mchq_33 |
Integer |
|
Recommended |
At what age did this activity begin? |
1::100; 888; 999
|
888=N/A; 999=missing data
|
|
Query
|
mchq_34 |
Integer |
|
Recommended |
Is the activity on going? |
1;2; 888; 999
|
1=Yes; 2=No; 888=N/A; 999=missing data
|
|
Query
|
mchq_35 |
Integer |
|
Recommended |
If it is not ongoing, when did you stop this activity? (activity age in years) |
1::100; 888; 999
|
888=N/A; 999=missing data
|
|
Query
|
mchq_36 |
Integer |
|
Recommended |
Do you currently use a hormonal contraceptive (oral, implant, patch, or hormone-secreting IUD) or are you on any hormone therapy? |
|
1=Yes; 2=No; 888=N/A; 999=missing data
|
mcq_03a |
Query
|
mchq_37 |
String |
25
|
Recommended |
If yes, please list contraceptive using the code below |
|
1=OC's for contraception; 2=OC's primarily for menstrual regulation; 3=Other estradiol for menstrual regulation; 4=progesterone for menstrual regulation; 5=fertility therapy; 6=other; 7=unknown
|
|
|
meau_01b |
Date |
|
Recommended |
When was the first day of your last menstrual period? |
|
|
mchq_38, mcq_01, mcq_04, mstrl2_last |
|
mchq_39 |
Date |
|
Recommended |
Can you approximate, based on your experience, when you expect the onset of your next period? |
|
|
mcq_03 |
|
labsample29 |
String |
10
|
Recommended |
Date of last menstrual period |
|
NA=if male or pre-puberty
|
mpdatm |
Query
|
gynecological_hist_2 |
String |
300
|
Recommended |
How many times have you been pregnant including miscarriages or abortions? |
|
If this does not apply to you, type "0".
|
|
Query
|
gynecological_hist_3b |
Integer |
|
Recommended |
What was this first hormone used for? |
1::6
|
1 = Birth control for contraception ; 2 = Birth control for menstrual regulation ; 3 = Estrogen pill for menstrual regulation ; 4 = Progesterone pill for menstrual regulation ; 5 = Other ; 6 = unknown
|
|
|
gynecological_hist_3c |
String |
100
|
Recommended |
At what age did you begin using this first hormone? |
|
|
|
Query
|
gynecological_hist_3d |
Integer |
|
Recommended |
How many months did you use this first hormone for? |
|
Please only write the number of months (i.e., enter "6" for 6 months of use)
|
|
Query
|
gynecological_hist_3e |
Integer |
|
Recommended |
Have you used another female hormone? |
0;1
|
0 = No; 1 = Yes
|
|
Query
|
gynecological_hist_3b_2 |
Integer |
|
Recommended |
What was this second hormone used for? |
1::6
|
1 = Birth control for contraception ; 2 = Birth control for menstrual regulation ; 3 = Estrogen pill for menstrual regulation ; 4 = Progesterone pill for menstrual regulation ; 5 = Other ; 6 = unknown
|
|
|
gynecological_hist_3c_2 |
String |
100
|
Recommended |
At what age did you begin using this second hormone? |
|
|
|
Query
|
gynecological_hist_3d_2 |
Integer |
|
Recommended |
How many months did you use this second hormone for? |
|
Please only write the number of months (i.e., enter "6" for 6 months of use)
|
|
Query
|
gynecological_hist_3e_2 |
Integer |
|
Recommended |
Have you used another female hormone? |
0;1
|
0 = No; 1 = Yes
|
|
Query
|
gynecological_hist_3b_3 |
Integer |
|
Recommended |
What was this third hormone used for? |
1::6
|
1 = Birth control for contraception ; 2 = Birth control for menstrual regulation ; 3 = Estrogen pill for menstrual regulation ; 4 = Progesterone pill for menstrual regulation ; 5 = Other ; 6 = unknown
|
|
|
gynecological_hist_3c_3 |
String |
100
|
Recommended |
At what age did you begin using this third hormone? |
|
|
|
Query
|
gynecological_hist_3d_3 |
Integer |
|
Recommended |
How many months did you use this third hormone for? |
|
Please only write the number of months (i.e., enter "6" for 6 months of use)
|
|
Query
|
gynecological_hist_3e_3 |
Integer |
|
Recommended |
Have you used another female hormone? |
0;1
|
0 = No; 1 = Yes
|
|
Query
|
gynecological_hist_3b_4 |
Integer |
|
Recommended |
What was this fourth hormone used for? |
1::6
|
1 = Birth control for contraception ; 2 = Birth control for menstrual regulation ; 3 = Estrogen pill for menstrual regulation ; 4 = Progesterone pill for menstrual regulation ; 5 = Other ; 6 = unknown
|
|
|
gynecological_hist_3c_4 |
String |
100
|
Recommended |
At what age did you begin using this fourth hormone? |
|
|
|
Query
|
gynecological_hist_3d_4 |
Integer |
|
Recommended |
How many months did you use this fourth hormone for? |
|
Please only write the number of months (i.e., enter "6" for 6 months of use)
|
|
Query
|
gynecological_hist_3e_4 |
Integer |
|
Recommended |
Have you used another female hormone? |
0;1
|
0 = No; 1 = Yes
|
|
Query
|
gynecological_hist_3b_5 |
Integer |
|
Recommended |
What was this fifth hormone used for? |
1::6
|
1 = Birth control for contraception ; 2 = Birth control for menstrual regulation ; 3 = Estrogen pill for menstrual regulation ; 4 = Progesterone pill for menstrual regulation ; 5 = Other ; 6 = unknown
|
|
|
gynecological_hist_3c_5 |
String |
100
|
Recommended |
At what age did you begin using this fifth hormone? |
|
|
|
Query
|
gynecological_hist_3d_5 |
Integer |
|
Recommended |
How many months did you use this fifth hormone for? |
|
Please only write the number of months (i.e., enter "6" for 6 months of use)
|
|
Query
|
gynecological_hist_4b |
Integer |
|
Recommended |
Hirsutism (excessive hair growth, especially on face) |
0;1
|
0 = No; 1 = Yes
|
|
Query
|
gynecological_hist_4d |
Integer |
|
Recommended |
Galactorrhea (breast milk production when not pregnant or lactating) |
0;1
|
0 = No; 1 = Yes
|
|
Query
|
gynecological_hist_6 |
Integer |
|
Recommended |
Are your/your child's menstrual cycles regular now? In other words, is the onset of each period generally predictable within 5 days? |
0;1
|
0 = No; 1 = Yes
|
|
Query
|
gynecological_hist_7 |
Integer |
|
Recommended |
On average, how regularly do you have a period? |
1::3
|
1 = Less than every 25 days ; 2 = Between 25-35 days ; 3 = More than every 35 days
|
|
Query
|
gynecological_hist_8 |
Integer |
|
Recommended |
How many days does your period usually flow? |
|
Please write an integer (i.e., write 5 for 5 days)
|
|
Query
|
pregev |
Integer |
|
Recommended |
Have you ever been pregnant |
0;1
|
0=No; 1=Yes
|
gynecological_hist_1 |
|
medication1_name |
String |
500
|
Recommended |
Name first medication that the participant has taken |
|
0 = No medication; 999= Legitimately skipped
|
gynecological_hist_3a |
|
medication2_name |
String |
500
|
Recommended |
Name second medication that the participant has taken |
|
0 = No medication; 999= Legitimately skipped
|
gynecological_hist_3a_2 |
|
medication3_name |
String |
500
|
Recommended |
Name third medication that the participant has taken |
|
0 = No medication; 999= Legitimately skipped
|
gynecological_hist_3a_3 |
|
medication4_name |
String |
500
|
Recommended |
Name fourth medication that the participant has taken |
|
0 = No medication; 999= Legitimately skipped
|
gynecological_hist_3a_4 |
|
medication5_name |
String |
500
|
Recommended |
Name fifth medication that the participant has taken |
|
0 = No medication; 999= Legitimately skipped
|
gynecological_hist_3a_5 |
|
daylastpd |
String |
30
|
Recommended |
First day of last menstrual period ( in days/months/years ago) |
|
|
gynecological_hist_5, men_start, mensthx07 |
Query
|
bcpever |
Integer |
|
Recommended |
ever taken birth control pills or progesterone |
0;1;-7
|
0=No; 1=Yes; -7=Refused
|
gynecological_hist_3 |
Query
|
pds6g |
Integer |
|
Recommended |
Girls only : Have you begun to menstruate? |
0;1;99
|
0=No; 1=Yes; 99 = Refused
|
men_period |
Query
|
regmense |
Integer |
|
Recommended |
Regular menstrual periods |
0;1; 999
|
0=No;1=Yes; 999=NA
|
men_reg |
Query
|
rlhq2q1 |
Integer |
|
Recommended |
Current use of ORAL contraceptive pills? |
|
1=Yes; 2=No
|
men_contr |
|
rev_endohypothyroidism |
String |
50
|
Recommended |
Hypothyroidism |
|
NK = Not known
|
mstrl1a |
|
hyperthyroid |
String |
20
|
Recommended |
Hyperthyroidism |
|
999=NA/missing
|
mstrl1b |
|
scq_24_a |
Integer |
|
Recommended |
Has a doctor ever told you that you have-Any other endocrine or hormone problem |
|
0 = No;1 = Yes
|
mstrl1c |
|
mhx016b |
String |
250
|
Recommended |
If YES, Enter onset/resolved date indicate ongoing with treatment or not. If NOT EVALUATED, explain or describe below: Endocrine disorder |
|
|
mstrl1c_age |
|
hypoage |
String |
50
|
Recommended |
age diagnosed hypothyroidism |
|
|
mstrl1a_age |
|
hyperage |
String |
50
|
Recommended |
age diagnosed hyperthyroidism |
|
|
mstrl1b_age |
|
straw1 |
Integer |
|
Recommended |
Have you had a period in the past year (12 months)? |
0;1
|
1 = Yes ; 0 = No
|
|
|
straw1a |
Integer |
|
Recommended |
When was your last period? Choose one of the following. |
1::4
|
1 = less than two years ago ; 2 = 2-3 years ago ; 3 = 3-6 years ago ; 4 = more than 6 years ago
|
|
|
straw1b |
Integer |
|
Recommended |
Why do you think your periods stopped? Please choose the best answer below. (read through all). |
1::7;999
|
1 = They stopped naturally as a I grew older and became postmenopausal - done with 'the change'? ; 2 = I have had a hysterectomy or endometrial ablation. ; 3 = I am pregnant or breast feeding. ; 4 = I am taking medications such as a birth control injection or an intrauterine device (eg, Mirena IUD) that makes my periods stop. ; 5 = I had chemotherapy and/or other treatments for cancer, and my periods stopped. ; 6 = I have dramatic weight loss (for example due to HIV or other medical condition or stressful/traumatic life experience) and my periods stopped. ; 7 = Other ; 999 = Don't know
|
|
|
straw1b_other |
String |
115
|
Recommended |
If other reason you think your periods stopped, fill in: |
|
|
|
|
straw2 |
Integer |
|
Recommended |
In the past 12 months, have you skipped or missed a period? In other words, have you ever gone 60 days, or two months, without a period? |
0;1
|
1 = Yes ; 0 = No
|
|
|
straw2a |
Integer |
|
Recommended |
Did you skip periods because you are getting older? (yes/no/don't know) |
0;1;999
|
1 = Yes ; 0 = No ; 999 = Don't Know
|
|
|
straw2b |
Integer |
|
Recommended |
Choose one of the following reasons why you skipped periods. |
1::5;999
|
1 = I am/was pregnant or breast feeding. ; 2 = I have had a hysterectomy or endometrial ablation. ; 3 = I am/was taking medications such as a birth control injection that makes my periods stop. ; 4 = I had chemotherapy and my periods stopped. ; 5 = Other ; 999 = Don't know
|
|
|
straw2b_other |
String |
100
|
Recommended |
If other reason you have skipped periods, fill in: |
|
|
|
|
straw3 |
Integer |
|
Recommended |
Have you noticed that your period comes earlier or later than you expected? |
0;1
|
1 = Yes ; 0 = No
|
|
|
straw3a |
Integer |
|
Recommended |
Has your period come late or early by at least a week? |
0;1;999
|
1 = Yes ; 0 = No ; 999 = Don't Know
|
|
|
straw3b |
Integer |
|
Recommended |
Did your period come late or early by at least a week two times or more over the past year (12 months)? |
0;1
|
1 = Yes ; 0 = No
|
|
|
straw4a |
Integer |
|
Recommended |
Have you noticed that the length of your period (# of bleeding days) is shorter or longer than usual for you? |
0;1;999
|
1 = Yes ; 0 = No ; 999 = Don't Know
|
|
|
straw4b |
Integer |
|
Recommended |
Have you noticed that the amount of bleeding during your period is more or less compared to what is normal for you? |
0;1;999
|
1 = Yes ; 0 = No ; 999 = Don't Know
|
|
|
straw_code |
Float |
|
Recommended |
Stages of Reproductive Aging Workshop (STRAW) code |
1.11;1.12;1.13;1.14;1.21;1.22;2;2.2;3;4.1;4.2;1.11002;1.12002;1.13002;1.14002;1.11004;1.12004;1.13004;1.14004;1.11007;1.12007;1.13007;1.14007;2.2001;2.2003
|
1.11 = Postmenopausal: plus 1a; 1.12 = Postmenopausal: plus 1b ; 1.13 = Postmenopausal: plus 1c; 1.14 = Postmenopausal: plus 2; 1.21 = Postmenopausal; 1.22 = No periods for 12 months other reason; 2 = Late Transition; 2.2 = Skipped periods not necessarily due to natural menopause; 3 = Early Transition ; 4.1 = Late Reproductive (i.e., late premenopausal); 4.2 = Reproductive(i.e., premenopausal); 1.11002 = Postmenopausal plus 1a, no periods for 12 months other reason. ;1.12002 = Postmenopausal plus 1b, no periods for 12 months other reason. ;1.13002 = Postmenopausal plus 1c, no periods for 12 months other reason. ;1.14002 = Postmenopausal plus 2, no periods for 12 months other reason.;1.11004 = Postmenopausal plus 1a, no periods for 12 months, IUD, Norplant, etc.. ;1.12004 = Postmenopausal plus 1b, no periods for 12 months, IUD, Norplant, etc.. ;1.13004 = Postmenopausal plus 1c, no periods for 12 months, IUD, Norplant, etc.. ;1.14004 = Postmenopausal plus 2, no periods for 12 months, IUD, Norplant, etc..;1.11007 = Postmenopausal plus 1a, unknown. ;1.12007 = Postmenopausal plus 1b, unknown. ;1.13007 = Postmenopausal plus 1c, unknown. ;1.14007 = Postmenopausal plus 2, unknown.;2.2001 = Skipped periods not necessarily due to natural menopause. ;2.2003 = Skipped periods, birth control injection or other med. - codes are explained in https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3580996/
|
|
|
mcq_02 |
String |
20
|
Recommended |
About how long is your entire cycle (days)? |
|
|
|
|
bc_type |
Integer |
|
Recommended |
What kind of birth control did you use? |
1::6;999
|
1 = Birth control pill; 2 = Birth control injections; 3 = Hormone ring; 4 = Intrauterine device (IUD); 5 = Birth control implant; 6 = Other; 999 = N/A or Prefer Not to Answer
|
|
|
bc_type_specify |
String |
100
|
Recommended |
Please specify the brand of pill, injection, IUD, implant, etc. you used: |
|
|
|
|
phi80 |
Integer |
|
Recommended |
Since 200x, were you diagnosed or treated by a doctor or nurse for Women only: Gynecological problems? |
0;1
|
0 = No; 1 = Yes
|
|
|
men1c |
Integer |
|
Recommended |
Has a physician altered your menstrual cycle? |
0;1
|
0 = No; 1 = Yes
|
|