Patient number
Item
Pat.-No.
integer
C1830427 (UMLS CUI [1])
The patient gave his or her consent on
Item
The patient gave his or her consent on
text
C2985782 (UMLS CUI [1])
Item
Are all inclusion criteria fulfilled?
integer
C1512693 (UMLS CUI [1])
Code List
Are all inclusion criteria fulfilled?
Item
Are none of the exclusion criteria fulfilled?
integer
C2828389 (UMLS CUI [1])
Code List
Are none of the exclusion criteria fulfilled?
Date of Screening
Item
Date of Screening
text
C0011008 (UMLS CUI [1,1])
C1710477 (UMLS CUI [1,2])
Date of Birth
Item
Date of Birth
text
C0421451 (UMLS CUI [1])
Item
Sex
integer
C0079399 (UMLS CUI [1])
Item
Nationality
integer
C0027473 (UMLS CUI [1])
specify nationality
Item
specify nationality
text
C0027473 (UMLS CUI [1])
Height
Item
Height
float
C0005890 (UMLS CUI [1])
Weight
Item
Weight
float
C0005910 (UMLS CUI [1])
LDH
Item
LDH
float
C0202113 (UMLS CUI [1])
1. Systolic blood pressure
Item
1. Systolic blood pressure
integer
C0871470 (UMLS CUI [1])
1. Diastolic blood pressure
Item
1. Diastolic blood pressure
integer
C0428883 (UMLS CUI [1])
2. Systolic blood pressure
Item
2. Systolic blood pressure
integer
C0871470 (UMLS CUI [1])
2. Diastolic blood pressure
Item
2. Diastolic blood pressure
integer
C0428883 (UMLS CUI [1])
3. Systolic blood pressure
Item
3. Systolic blood pressure
integer
C0871470 (UMLS CUI [1])
3. Diastolic blood pressure
Item
3. Diastolic blood pressure
integer
C0428883 (UMLS CUI [1])
Sitting heart rate
Item
Sitting heart rate
integer
C2029904 (UMLS CUI [1])
Body temperature
Item
Body temperature
float
C0005903 (UMLS CUI [1])
Item
Physical examination
integer
C0031809 (UMLS CUI [1])
Code List
Physical examination
CL Item
without pathologic findings (0)
CL Item
with pathologic findings (1)
Item
Abdominal ultrasound
integer
C2348813 (UMLS CUI [1])
Code List
Abdominal ultrasound
CL Item
without pathologic findings (0)
CL Item
with pathologic findings (1)
Item
12-lead electrocardiogram
integer
C0430456 (UMLS CUI [1])
Code List
12-lead electrocardiogram
CL Item
without pathologic findings , 1=with pathologic findings (0)
Item
Bone marrow
integer
C0005957 (UMLS CUI [1])
CL Item
without pathologic findings (0)
CL Item
with pathologic findings (1)
Walk distance
Item
Walk distance
integer
C3854161 (UMLS CUI [1])
Item
Does the patient report symptoms of dyspnea?
integer
C0013404 (UMLS CUI [1])
Code List
Does the patient report symptoms of dyspnea?
Date of first Cold Agglutin Disease
Item
Date of first Cold Agglutin Disease diagnosis
date
C0011008 (UMLS CUI [1,1])
C0175816 (UMLS CUI [1,2])
Item
Thrombophlebitis/Deep Vein Thrombosis
integer
C0040046 (UMLS CUI [1])
C0149871 (UMLS CUI [2])
Code List
Thrombophlebitis/Deep Vein Thrombosis
Item
Pulmonary Embolus
integer
C0034065 (UMLS CUI [1])
Code List
Pulmonary Embolus
Item
Cerebrovascular Accident
integer
C0038454 (UMLS CUI [1])
Code List
Cerebrovascular Accident
Item
Amputation
integer
C0002688 (UMLS CUI [1])
Item
Myocardial Infarction
integer
C0027051 (UMLS CUI [1])
Code List
Myocardial Infarction
Item
Transient Ischemic Attack
integer
C0007787 (UMLS CUI [1])
Code List
Transient Ischemic Attack
Item
Unstable Angina
integer
C0002965 (UMLS CUI [1])
Code List
Unstable Angina
Item
Renal Vein Thrombosis
integer
C0238457 (UMLS CUI [1])
Code List
Renal Vein Thrombosis
Item
Mesenteric Vein Thrombosis
integer
C0267412 (UMLS CUI [1])
Code List
Mesenteric Vein Thrombosis
Item
Portal Vein Thrombosis (Budd-Chiari)
integer
C0155773 (UMLS CUI [1])
Code List
Portal Vein Thrombosis (Budd-Chiari)
Item
Gangrene
integer
C0017086 (UMLS CUI [1])
Item
Acute Peripheral Vascular Occlusion
integer
C0240728 (UMLS CUI [1])
Code List
Acute Peripheral Vascular Occlusion
Item
Sudden Death
integer
C0011071 (UMLS CUI [1])
Item
Patient suffers from other accompanying illnesses?
integer
C0009488 (UMLS CUI [1])
Code List
Patient suffers from other accompanying illnesses?
Item
Only for Woman (under 50): Is the pregnancy test negativ?
integer
C0032976 (UMLS CUI [1])
Code List
Only for Woman (under 50): Is the pregnancy test negativ?
Comments
Item
Comments
text
C0947611 (UMLS CUI [1])
Signature date
Item
Signature date
date
C0807937 (UMLS CUI [1])
Item
Investigator's signature
integer
C2346576 (UMLS CUI [1])
Code List
Investigator's signature
Date of blood transfusion
Item
Date of blood transfusion
date
C1264703 (UMLS CUI [1])
Number of units
Item
Number of units
integer
C0086252 (UMLS CUI [1,1])
C0449961 (UMLS CUI [1,2])
Hemoglobin before transfusion
Item
Hemoglobin before transfusion
float
C0518015 (UMLS CUI [1])
Item
Any special events circumstances transfusion?
integer
C0877248 (UMLS CUI [1,1])
C1879316 (UMLS CUI [1,2])
Code List
Any special events circumstances transfusion?
if yes, please specify
Item
if yes, please specify
text
C0877248 (UMLS CUI [1,1])
C1879316 (UMLS CUI [1,2])
Signature date
Item
Signature date
date
C0807937 (UMLS CUI [1])
Item
Investigator's signature
integer
C2346576 (UMLS CUI [1])
Code List
Investigator's signature
Item
The patient has no preexisting/concomitant diseases
integer
C0243087 (UMLS CUI [1])
Code List
The patient has no preexisting/concomitant diseases
Signature date
Item
Signature date
date
C0807937 (UMLS CUI [1])
Item
Investigator's signature
integer
C2346576 (UMLS CUI [1])
Code List
Investigator's signature
Item
lack of vitality
integer
C1337102 (UMLS CUI [1])
Code List
lack of vitality
Item
nausea
integer
C0027497 (UMLS CUI [1])
Item
General health deterioration
integer
C0563273 (UMLS CUI [1])
Code List
General health deterioration
Item
pain
integer
C0030193 (UMLS CUI [1])
Item
treatment side-effects
integer
C0879626 (UMLS CUI [1])
Code List
treatment side-effects
Item
feeling of illness
integer
C0231218 (UMLS CUI [1])
Code List
feeling of illness
Item
bedrest
integer
C0004910 (UMLS CUI [1])
Item
Freunden nahe
integer
C0518615 (UMLS CUI [1])
Item
Family support
integer
C0150232 (UMLS CUI [1])
Item
receives support from friends
integer
C2984072 (UMLS CUI [1])
Code List
receives support from friends
Item
accepts disease
integer
Code List
accepts disease
satisfied with talking about
Item
text
Item
satisfied with talking about disease
integer
Code List
satisfied with talking about disease
Item
feel close to other people
integer
C2984048 (UMLS CUI [1])
C2984059 (UMLS CUI [2])
Code List
feel close to other people
Item
satisfied with sex life
integer
C2984060 (UMLS CUI [1])
Code List
satisfied with sex life
Item
sadness
integer
C3827348 (UMLS CUI [1])
Item
satisfied with fighting against the illness
integer
Code List
satisfied with fighting against the illness
Item
losing hope
integer
C2984056 (UMLS CUI [1])
Item
nervousness
integer
C0027769 (UMLS CUI [1])
Item
worries about death
integer
C2984076 (UMLS CUI [1])
Code List
worries about death
Item
worries about condition
integer
C2984075 (UMLS CUI [1])
Code List
worries about condition
Item
able to work
integer
C2984044 (UMLS CUI [1])
Item
satisfied with work
integer
C0578800 (UMLS CUI [1])
Code List
satisfied with work
Item
able to enjoy life
integer
C2984051 (UMLS CUI [1])
Code List
able to enjoy life
Item
cope with disease
integer
C0009967 (UMLS CUI [1,1])
C0012634 (UMLS CUI [1,2])
Code List
cope with disease
Item
sleeping
integer
C0474396 (UMLS CUI [1])
Item
able to enjoy leisure
integer
C2984052 (UMLS CUI [1])
Code List
able to enjoy leisure
Item
currently satisfied with life
integer
C1954023 (UMLS CUI [1])
Code List
currently satisfied with life
Item
fatigue
integer
C0015672 (UMLS CUI [1])
Item
weak
integer
C3714552 (UMLS CUI [1])
Item
listless
integer
C0023380 (UMLS CUI [1])
Item
tired
integer
C0848717 (UMLS CUI [1])
Item
tiredness limiting starting things
integer
C0015672 (UMLS CUI [1,1])
C0439659 (UMLS CUI [1,2])
Code List
tiredness limiting starting things
Item
tiredness limits finishing things
integer
C0015672 (UMLS CUI [1,1])
C3259534 (UMLS CUI [1,2])
Code List
tiredness limits finishing things
Item
having energy
integer
C0542479 (UMLS CUI [1])
Item
able to do usual activities
integer
C0441655 (UMLS CUI [1])
Code List
able to do usual activities
Item
sleep during daytime
integer
C4075948 (UMLS CUI [1])
Code List
sleep during daytime
Item
too tired to eat
integer
C3897355 (UMLS CUI [1])
Code List
too tired to eat
Item
need help with usual activities
integer
C3898152 (UMLS CUI [1])
Code List
need help with usual activities
Item
frustrated by fatigue
integer
C0016770 (UMLS CUI [1,1])
C0015672 (UMLS CUI [1,2])
Code List
frustrated by fatigue
Item
fatigue limiting social activity
integer
C3898911 (UMLS CUI [1])
Code List
fatigue limiting social activity
Item
1. In general, would you say your health is:
integer
C1142435 (UMLS CUI [1])
Code List
1. In general, would you say your health is:
Item
2. Compared to one year ago, how would you rate your health in general now?
integer
Code List
2. Compared to one year ago, how would you rate your health in general now?
CL Item
Much better now than one year ago (1)
CL Item
Somewhat better now than one year ago (2)
CL Item
About the same (3)
CL Item
Somewhat worse now than one year ago (4)
CL Item
Much worse now than one year ago (5)
limited in activities
Item
3. The following items are about activities you might do during a typical day. Does your health now limit you in these activities? If so, how much?
text
Item
a) Vigorous activities, such as running, lifting heavy objects, participating in strenuous sports
integer
C3827557 (UMLS CUI [1])
Code List
a) Vigorous activities, such as running, lifting heavy objects, participating in strenuous sports
CL Item
Yes, limited a lot (1)
CL Item
Yes, limited a little (2)
CL Item
No, not limited at all (3)
Item
b) Moderate activities, such as moving a table, pushing a vacuum cleaner, bowling, or playing golf
integer
C3833417 (UMLS CUI [1])
Code List
b) Moderate activities, such as moving a table, pushing a vacuum cleaner, bowling, or playing golf
CL Item
Yes, limited a lot (1)
CL Item
Yes, limited a little (2)
CL Item
No, not limited at all (3)
Item
c) Lifting or carrying groceries
integer
C3829286 (UMLS CUI [1])
Code List
c) Lifting or carrying groceries
CL Item
Yes, limited a lot (1)
CL Item
Yes, limited a little (2)
CL Item
No, not limited at all (3)
Item
d) Climbing several flights of stairs
integer
C3831080 (UMLS CUI [1])
Code List
d) Climbing several flights of stairs
CL Item
Yes, limited a lot (1)
CL Item
Yes, limited a little (2)
CL Item
No, not limited at all (3)
Item
e) Climbing one flight of stairs
integer
Code List
e) Climbing one flight of stairs
CL Item
Yes, limited a lot (1)
CL Item
Yes, limited a little (2)
CL Item
No, not limited at all (3)
Item
f) Bending, kneeling, or stooping
integer
C3831371 (UMLS CUI [1])
Code List
f) Bending, kneeling, or stooping
CL Item
Yes, limited a lot (1)
CL Item
Yes, limited a little (2)
CL Item
No, not limited at all (3)
Item
g) Walking more than a mile
integer
C3827523 (UMLS CUI [1])
Code List
g) Walking more than a mile
CL Item
Yes, limited a lot (1)
CL Item
Yes, limited a little (2)
CL Item
No, not limited at all (3)
Item
h) Walking several blocks
integer
C3827521 (UMLS CUI [1])
Code List
h) Walking several blocks
CL Item
Yes, limited a lot (1)
CL Item
Yes, limited a little (2)
CL Item
No, not limited at all (3)
Item
i) Walking one block
integer
C3827522 (UMLS CUI [1])
Code List
i) Walking one block
CL Item
Yes, limited a lot (1)
CL Item
Yes, limited a little (2)
CL Item
No, not limited at all (3)
Item
j) Bathing or dressing yourself
integer
C3831396 (UMLS CUI [1])
Code List
j) Bathing or dressing yourself
CL Item
Yes, limited a lot (1)
CL Item
Yes, limited a little (2)
CL Item
No, not limited at all (3)
problems in past 4 weeks
Item
4. During the past 4 weeks, have you had any of the following problems with your work or other regular daily activities as a result of your physical health?
text
Item
a) Cut down the amount of time you spent on work or other activities
integer
C0585074 (UMLS CUI [1])
Code List
a) Cut down the amount of time you spent on work or other activities
CL Item
All of the time (1)
CL Item
Most of the time (2)
CL Item
Some of the time (3)
CL Item
A little of the time (4)
CL Item
None of the time (5)
Item
b) Accomplished less than you would like
integer
C3900126 (UMLS CUI [1])
Code List
b) Accomplished less than you would like
CL Item
All of the time (1)
CL Item
Most of the time (2)
CL Item
Some of the time (3)
CL Item
A little of the time (4)
CL Item
None of the time (5)
Item
c) Were limited in the kind of work or other activities
integer
C3898591 (UMLS CUI [1])
Code List
c) Were limited in the kind of work or other activities
CL Item
All of the time (1)
CL Item
Most of the time (2)
CL Item
Some of the time (3)
CL Item
A little of the time (4)
CL Item
None of the time (5)
Item
d) Had difficulty performing the work or other activities (for example, it took extra effort)
integer
C3898961 (UMLS CUI [1])
Code List
d) Had difficulty performing the work or other activities (for example, it took extra effort)
CL Item
All of the time (1)
CL Item
Most of the time (2)
CL Item
Some of the time (3)
CL Item
A little of the time (4)
CL Item
None of the time (5)
emotional problems
Item
5. During the past 4 weeks, have you had any of the following problems with your work or other regular daily activities as a result of any emotional problems (such as feeling depressed or anxious)?
text
Item
a) Cut down the amount of time you spent on work or other activities
integer
C0585074 (UMLS CUI [1,1])
C0677660 (UMLS CUI [1,2])
Code List
a) Cut down the amount of time you spent on work or other activities
CL Item
All of the time (1)
CL Item
Most of the time (2)
CL Item
Some of the time (3)
CL Item
A little of the time (4)
CL Item
None of the time (5)
Item
b) Accomplished less than you would like
integer
C3900126 (UMLS CUI [1])
Code List
b) Accomplished less than you would like
CL Item
All of the time (1)
CL Item
Most of the time (2)
CL Item
Some of the time (3)
CL Item
A little of the time (4)
CL Item
None of the time (5)
Item
c) Didn't do work or other activities as carefully as usual
integer
C3899381 (UMLS CUI [1])
Code List
c) Didn't do work or other activities as carefully as usual
CL Item
All of the time (1)
CL Item
Most of the time (2)
CL Item
Some of the time (3)
CL Item
A little of the time (4)
CL Item
None of the time (5)
Item
6. During the past 4 weeks, to what extent has your physical health or emotional problems interfered with your normal social activities with family, friends, neighbors, or groups?
integer
C0677660 (UMLS CUI [1,1])
C3829529 (UMLS CUI [1,2])
Code List
6. During the past 4 weeks, to what extent has your physical health or emotional problems interfered with your normal social activities with family, friends, neighbors, or groups?
Item
7. How much bodily pain have you had during the past 4 weeks?
integer
C0030193 (UMLS CUI [1])
Code List
7. How much bodily pain have you had during the past 4 weeks?
Item
8. During the past 4 weeks, how much did pain interfere with your normal work (including both work outside the home and housework)?
integer
C3898033 (UMLS CUI [1])
Code List
8. During the past 4 weeks, how much did pain interfere with your normal work (including both work outside the home and housework)?
feelings last 4 weeks
Item
9. These questions are about how you feel and how things have been with you during the past 4 weeks. For each question, please give the one answer that comes closest to the way you have been feeling.
text
Item
a) Did you feel full of pep?
integer
C3484313 (UMLS CUI [1])
Code List
a) Did you feel full of pep?
CL Item
All of the time (1)
CL Item
Most of the time (2)
CL Item
Some of the time (3)
CL Item
A little of the time (4)
CL Item
None of the time (5)
Item
b) Have you been a very nervous person?
integer
C3475469 (UMLS CUI [1])
Code List
b) Have you been a very nervous person?
CL Item
All of the time (1)
CL Item
Most of the time (2)
CL Item
Some of the time (3)
CL Item
A little of the time (4)
CL Item
None of the time (5)
Item
c) Have you felt so down in the dumps that nothing could cheer you up?
integer
C3475473 (UMLS CUI [1])
Code List
c) Have you felt so down in the dumps that nothing could cheer you up?
CL Item
All of the time (1)
CL Item
Most of the time (2)
CL Item
Some of the time (3)
CL Item
A little of the time (4)
CL Item
None of the time (5)
Item
d) Have you felt calm and peaceful?
integer
C3475471 (UMLS CUI [1])
Code List
d) Have you felt calm and peaceful?
CL Item
All of the time (1)
CL Item
Most of the time (2)
CL Item
Some of the time (3)
CL Item
A little of the time (4)
CL Item
None of the time (5)
Item
e) Did you have a lot of energy?
integer
C3484316 (UMLS CUI [1])
Code List
e) Did you have a lot of energy?
CL Item
All of the time (1)
CL Item
Most of the time (2)
CL Item
Some of the time (3)
CL Item
A little of the time (4)
CL Item
None of the time (5)
Item
f) Have you felt downhearted and blue?
integer
C3475472 (UMLS CUI [1])
Code List
f) Have you felt downhearted and blue?
CL Item
All of the time (1)
CL Item
Most of the time (2)
CL Item
Some of the time (3)
CL Item
A little of the time (4)
CL Item
None of the time (5)
Item
g) Did you feel worn out?
integer
C3484315 (UMLS CUI [1])
Code List
g) Did you feel worn out?
CL Item
All of the time (1)
CL Item
Most of the time (2)
CL Item
Some of the time (3)
CL Item
A little of the time (4)
CL Item
None of the time (5)
Item
h) Have you been a happy person?
integer
C3475468 (UMLS CUI [1])
Code List
h) Have you been a happy person?
CL Item
All of the time (1)
CL Item
Most of the time (2)
CL Item
Some of the time (3)
CL Item
A little of the time (4)
CL Item
None of the time (5)
Item
i) Did you feel tired?
integer
C3484314 (UMLS CUI [1])
Code List
i) Did you feel tired?
CL Item
All of the time (1)
CL Item
Most of the time (2)
CL Item
Some of the time (3)
CL Item
A little of the time (4)
CL Item
None of the time (5)
Item
10. During the past 4 weeks, how much of the time has your physical health or emotional problems interfered with your social activities (like visiting with friends, relatives, etc.)?
integer
C0677660 (UMLS CUI [1,1])
C0521102 (UMLS CUI [1,2])
C3641834 (UMLS CUI [1,3])
Code List
10. During the past 4 weeks, how much of the time has your physical health or emotional problems interfered with your social activities (like visiting with friends, relatives, etc.)?
CL Item
All of the time (1)
CL Item
Most of the time (2)
CL Item
Some of the time (3)
CL Item
A little of the time (4)
CL Item
None of the time (5)
How TRUE or FALSE is each of the following statements for you.
Item
11. How TRUE or FALSE is each of the following statements for you.
text
Item
a) I seem to get sick a little easier than other people
integer
C3899028 (UMLS CUI [1])
Code List
a) I seem to get sick a little easier than other people
CL Item
Definitely true (1)
CL Item
Definitely false (5)
Item
b) I am as healthy as anybody I know
integer
C3900054 (UMLS CUI [1])
Code List
b) I am as healthy as anybody I know
CL Item
Definitely true (1)
CL Item
Definitely false (5)
Item
c) I expect my health to get worse
integer
C3475697 (UMLS CUI [1])
Code List
c) I expect my health to get worse
CL Item
Definitely true (1)
CL Item
Definitely false (5)
Item
d) My health is excellent
integer
C3476206 (UMLS CUI [1])
Code List
d) My health is excellent
CL Item
Definitely true (1)
CL Item
Definitely false (5)