ID

5312

Description

Prospective non–randomized multi​center study for epidemiology and characterization of Myelodysplastic Syndromes(MDS) and Juvenile Myelomonocytic Leukemia (JMML) in child­hood. PI: Prof. Dr. Charlotte Niemeyer http://clinicaltrials.gov/ct2/show/NCT00662090 http://www.ewog-mds.org/

Link

http://clinicaltrials.gov/ct2/show/NCT00662090

Keywords

  1. 8/5/14 8/5/14 - Martin Dugas
  2. 8/5/14 8/5/14 - Martin Dugas
Uploaded on

August 5, 2014

DOI

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License

Creative Commons BY 4.0

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EWOG MDS 2006 Previous history DRKS00003789

Previous history

  1. StudyEvent: SE
    1. Previous history
Show identification of patient
Description

Show identification of patient

Dummy
Description

Dummy

Data type

text

Previous history
Description

Previous history

Xanthoma
Description

Xanthoma

Data type

integer

Café-au-lait spots
Description

Café-au-lait spots

Data type

integer

Other symptoms of NF1
Description

Other symptoms of NF1

Data type

integer

1° relatives with NF1
Description

1° relatives with NF1

Data type

integer

Previous congenital bone marrow failure disorder
Description

Previous congenital bone marrow failure disorder

Data type

integer

Previous acquired bone marrow failure disorder
Description

Previous acquired bone marrow failure disorder

Data type

integer

Previous malignancy
Description

Previous malignancy

Data type

integer

Previous chemo-radiotherapy (CT and/or RT)
Description

Previous chemo-radiotherapy (CT and/or RT)

Data type

integer

Mental retardation
Description

Mental retardation

Data type

integer

Birth weight < third percentile
Description

Birth weight < third percentile

Data type

integer

Height < third percentile (at diagnosis)
Description

Height < third percentile (at diagnosis)

Data type

integer

Weight < third percentile (at diagnosis)
Description

Weight < third percentile (at diagnosis)

Data type

integer

Head circumference < third percentile (at diagnosis)
Description

Head circumference < third percentile (at diagnosis)

Data type

integer

Clinical evidence of PNH
Description

Clinical evidence of PNH

Data type

integer

Hepatitis/Hepatopathy
Description

Hepatitis/Hepatopathy

Data type

integer

Patient is twin
Description

Patient is twin

Data type

integer

Congenital abnormalities
Description

Congenital abnormalities

Data type

integer

Other abnormalities
Description

Other abnormalities

Data type

integer

Number of cafe au lait spots
Description

Number of cafe au lait spots

Number of Café-au-lait spots
Description

Number of Café-au-lait spots

Data type

integer

Type of other NF1 Symptoms
Description

Type of other NF1 Symptoms

Neurofibroma of any type
Description

Neurofibromas of any type

Data type

integer

Plexiform neurofibroma
Description

Plexiform neurofibroma

Data type

integer

Freckling in the axillary or inguinal regions
Description

Freckling in the axillary or inguinal regions

Data type

integer

Optic glioma
Description

Optic glioma

Data type

integer

>= 2 Lisch nodules of the iris
Description

>= 2 Lisch nodules of the iris

Data type

integer

Osseous lesions associated with NF1
Description

Osseous lesions associated with NF1

Data type

integer

Degree of relationship of NF1 relatives
Description

Degree of relationship of NF1 relatives

Mother
Description

Mother

Data type

integer

Father
Description

Father

Data type

integer

Sister
Description

Sister

Data type

integer

Brother
Description

Brother

Data type

integer

Other relatives
Description

Other relatives

Data type

integer

Type of previous cBMF
Description

Type of previous cBMF

Previous congenital bone marrow failure disorder
Description

Previous congenital bone marrow failure disorder

Data type

integer

Other type of congenital BMF
Description

Type

Data type

text

Date and type of acquired BMF
Description

Date and type of acquired BMF

Date of previous aBMF
Description

Date of previous aBMF

Data type

date

Type of aBMF
Description

Previous acquired bone marrow failure disorder

Data type

integer

Other type of aBMF
Description

Previous acquired bone marrow failure disorder

Data type

text

Date and type of previous malignancy
Description

Date and type of previous malignancy

Date of previous malignancy
Description

Date of previous malignancy

Data type

date

Type of previous malignancy
Description

Type of previous malignancy

Data type

integer

Other type of previous malignancy
Description

Other type of previous malignancy

Data type

text

Type of previous chemo therapy
Description

Type of previous chemo therapy

Type of chemo therapy
Description

Type of chemo therapy

Data type

text

Type of radiotherapy
Description

Type of radiotherapy

Data type

text

Type of cong. abnormalities
Description

Type of cong. abnormalities

Type of congenital abnormalities
Description

Type of congenital abnormalities

Data type

text

Type of other abnormalties
Description

Type of other abnormalties

Type of other abnormalities
Description

Type of other abnormalities

Data type

text

Type of twin
Description

Type of twin

Type of twin
Description

Type of twin

Data type

integer

Family history
Description

Family history

Parents are consanguineous
Description

Parents are consanguineous

Data type

integer

History of malignancies in family (1° relatives)
Description

History of malignancies in family (1° relatives)

Data type

integer

History of hemato-/immunological diseases
Description

History of hemato-/immunological diseases

Data type

integer

History of other possibly relevant diseases
Description

History of other possibly relevant diseases

Data type

integer

Family history of malignancies
Description

Family history of malignancies

Mother
Description

Mother

Data type

integer

Father
Description

Father

Data type

integer

Sister
Description

Sister

Data type

integer

Brother
Description

Brother

Data type

integer

Mother affected
Description

Mother affected

Type of mother's malignancy
Description

Type of mother's malignancy

Data type

text

Father affected
Description

Father affected

Type of father's malignancy
Description

Type of father's malignancy

Data type

text

Sister affected
Description

Sister affected

Type of sister's malignancy
Description

Type of sister's malignancy

Data type

text

Brother affected
Description

Brother affected

Type of brother's malignancy
Description

Type of brother's malignancy

Data type

text

Hemato/Immunological diseases in the family
Description

Hemato/Immunological diseases in the family

Type of hemato-/immunological diseases
Description

Type of hemato-/immunological diseases

Data type

text

Type of other diseases in the family
Description

Type of other diseases in the family

Type of other possibly relevant diseases
Description

Type of other possibly relevant diseases

Data type

text

Similar models

Previous history

  1. StudyEvent: SE
    1. Previous history
Name
Type
Description | Question | Decode (Coded Value)
Data type
Alias
Dummy
Item
Dummy
text
Item
Xanthoma
integer
Code List
Xanthoma
CL Item
No (1)
CL Item
Yes (2)
Item
Café-au-lait spots
integer
Code List
Café-au-lait spots
CL Item
No (1)
CL Item
Yes (2)
Item
Other symptoms of NF1
integer
Code List
Other symptoms of NF1
CL Item
No (1)
CL Item
Yes (2)
Item
1° relatives with NF1
integer
Code List
1° relatives with NF1
CL Item
No (1)
CL Item
Yes (2)
Item
Previous congenital bone marrow failure disorder
integer
Code List
Previous congenital bone marrow failure disorder
CL Item
No (1)
CL Item
Yes (2)
Item
Previous acquired bone marrow failure disorder
integer
Code List
Previous acquired bone marrow failure disorder
CL Item
No (1)
CL Item
Yes (2)
Item
Previous malignancy
integer
Code List
Previous malignancy
CL Item
No (1)
CL Item
Yes (2)
Item
Previous chemo-radiotherapy (CT and/or RT)
integer
Code List
Previous chemo-radiotherapy (CT and/or RT)
CL Item
No (1)
CL Item
Yes (2)
Item
Mental retardation
integer
Code List
Mental retardation
CL Item
No (1)
CL Item
Yes (2)
Item
Birth weight < third percentile
integer
Code List
Birth weight < third percentile
CL Item
No (1)
CL Item
Yes (2)
Item
Height < third percentile (at diagnosis)
integer
Code List
Height < third percentile (at diagnosis)
CL Item
No (1)
CL Item
Yes (2)
Item
Weight < third percentile (at diagnosis)
integer
Code List
Weight < third percentile (at diagnosis)
CL Item
No (1)
CL Item
Yes (2)
Item
Head circumference < third percentile (at diagnosis)
integer
Code List
Head circumference < third percentile (at diagnosis)
CL Item
No (1)
CL Item
Yes (2)
Item
Clinical evidence of PNH
integer
Code List
Clinical evidence of PNH
CL Item
No (1)
CL Item
Yes (2)
Item
Hepatitis/Hepatopathy
integer
Code List
Hepatitis/Hepatopathy
CL Item
No (1)
CL Item
Yes (2)
Item
Patient is twin
integer
Code List
Patient is twin
CL Item
No (1)
CL Item
Yes (2)
Item
Congenital abnormalities
integer
Code List
Congenital abnormalities
CL Item
No (1)
CL Item
Yes (2)
Item
Other abnormalities
integer
Code List
Other abnormalities
CL Item
No (1)
CL Item
Yes (2)
Item Group
Number of cafe au lait spots
Item
Number of Café-au-lait spots
integer
Code List
Number of Café-au-lait spots
CL Item
1 (1)
CL Item
2 (2)
CL Item
3 (3)
CL Item
4 (4)
CL Item
5 (5)
CL Item
6 (6)
CL Item
7 (7)
CL Item
8 (8)
CL Item
9 (9)
CL Item
> (10)
Item
Neurofibroma of any type
integer
Code List
Neurofibroma of any type
CL Item
No (1)
CL Item
Yes (2)
Item
Plexiform neurofibroma
integer
Code List
Plexiform neurofibroma
CL Item
No (1)
CL Item
Yes (2)
Item
Freckling in the axillary or inguinal regions
integer
Code List
Freckling in the axillary or inguinal regions
CL Item
No (1)
CL Item
Yes (2)
Item
Optic glioma
integer
Code List
Optic glioma
CL Item
No (1)
CL Item
Yes (2)
Item
>= 2 Lisch nodules of the iris
integer
Code List
>= 2 Lisch nodules of the iris
CL Item
No (1)
CL Item
Yes (2)
Item
Osseous lesions associated with NF1
integer
Code List
Osseous lesions associated with NF1
CL Item
No (1)
CL Item
Yes (2)
Item
Mother
integer
Code List
Mother
CL Item
No (1)
CL Item
Yes (2)
Item
Father
integer
Code List
Father
CL Item
No (1)
CL Item
Yes (2)
Item
Sister
integer
Code List
Sister
CL Item
No (1)
CL Item
Yes (2)
Item
Brother
integer
Code List
Brother
CL Item
No (1)
CL Item
Yes (2)
Item
Other relatives
integer
Code List
Other relatives
CL Item
No (1)
CL Item
Yes (2)
Item
Previous congenital bone marrow failure disorder
integer
Code List
Previous congenital bone marrow failure disorder
CL Item
Shwachman Diamond Syndrome (1)
CL Item
Severe congenital neutropenia (SCN) (2)
CL Item
Diamond Blackfan Anemia (DBA) (3)
CL Item
cong. sideroblastic anemia (4)
CL Item
Fanconi Anemia (5)
CL Item
Dyskeratosis congenita (6)
CL Item
Other (99)
Type
Item
Other type of congenital BMF
text
Date of previous aBMF
Item
Date of previous aBMF
date
Code List
Type of aBMF
CL Item
SAA (1)
CL Item
Other (99)
Previous acquired bone marrow failure disorder
Item
Other type of aBMF
text
Date of previous malignancy
Item
Date of previous malignancy
date
Item
Type of previous malignancy
integer
Code List
Type of previous malignancy
CL Item
ALL (1)
CL Item
AML (2)
CL Item
NHL (3)
CL Item
Ewing sarcoma (4)
CL Item
Medulloblastoma (5)
CL Item
Neuroblastoma (6)
CL Item
Other (99)
Other type of previous malignancy
Item
Other type of previous malignancy
text
Type of chemo therapy
Item
Type of chemo therapy
text
Type of radiotherapy
Item
Type of radiotherapy
text
Item Group
Type of cong. abnormalities
Type of congenital abnormalities
Item
Type of congenital abnormalities
text
Item Group
Type of other abnormalties
Type of other abnormalities
Item
Type of other abnormalities
text
Item Group
Item
Type of twin
integer
Code List
Type of twin
CL Item
Monozygotic (1)
CL Item
Dizygotic (2)
Item Group
Item
Parents are consanguineous
integer
Code List
Parents are consanguineous
CL Item
No (1)
CL Item
Yes (2)
Item
History of malignancies in family (1° relatives)
integer
Code List
History of malignancies in family (1° relatives)
CL Item
No (1)
CL Item
Yes (2)
Item
History of hemato-/immunological diseases
integer
Code List
History of hemato-/immunological diseases
CL Item
No (1)
CL Item
Yes (2)
Item
History of other possibly relevant diseases
integer
Code List
History of other possibly relevant diseases
CL Item
No (1)
CL Item
Yes (2)
Item
Mother
integer
Code List
Mother
CL Item
No (1)
CL Item
Yes (2)
Item
Father
integer
Code List
Father
CL Item
No (1)
CL Item
Yes (2)
Item
Sister
integer
Code List
Sister
CL Item
No (1)
CL Item
Yes (2)
Item
Brother
integer
Code List
Brother
CL Item
No (1)
CL Item
Yes (2)
Type of mother's malignancy
Item
Type of mother's malignancy
text
Type of father's malignancy
Item
Type of father's malignancy
text
Type of sister's malignancy
Item
Type of sister's malignancy
text
Type of brother's malignancy
Item
Type of brother's malignancy
text
Type of Hemato-/ Immunological diseases
Item
Type of hemato-/immunological diseases
text
Type of other possibly relevant diseases
Item
Type of other possibly relevant diseases
text

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