Factor XII Registry
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Name
Name of Institution
Street address
Post/ZIP code, Town
Country
Phone
Fax
E-mail address
Demographic Data
Patient initials
Date of Birth
Gender
Male
Female
Ethnic Origion
White
Black
Asian
American indian
Unknown
Nationality
Place of Residence
Is the patient alive today
No
Yes
If no, please enter the date of death
Cause of death
Other family members with FXII deficiencys
No
Yes
Family Data
Parents
consanguined
not consanguined
Unknown
ABO Blood group
Father
Mother
Do parents suffer from a bleeding disorder
Mother
Father
Both
No
Unknown
If yes, please specify
Spontanous bleeding
Bleeding after major Surgery/ Trauma
Bleeding after minor Surgery/ Trauma
Do parents suffer from venous thromboembolism
Mother
Father
Both
No
Unknown
If yes, please specify
Unprovoked VTE
Provoked VTE
DVT in the leg
DVT in the arm
Pulmonary Embolism
Other
Do parents suffer from a bleeding disorder
Mother
Father
Both
No
Unknown
If yes, please specify
Spontanous bleeding
Bleeding after major Surgery/ Trauma
Bleeding after minor Surgery/ Trauma
Do parents suffer from repeated infections
Mother
Father
Both
No
Unknown
If yes, please specify
Recurrent viral infections
Recurrent bacterial infections
Recurrent fungal infections
Life threatening infections
Patients Clinical Data
Age at diagnosis
Lowest FXII activity level
Method used for measuring FXII
Initial Manifistation
1- Bleeding
None
Mild
Moderate
Sever
Subcutanous
Mucous membrane
Epistaxis
Menorrhagia
Post-partum bleeding
Intraabdominal
Gastrointestinal
CNS
Muscle
Joint
Umblical cord
After surgery/ Trauma
2- Thromboembolic events
None
Mild
Moderate
Sever
Arterial
Venous
Arterial and venous
None
Unprovoked DVT leg
Unprovoked DVT arm
Unprovoked Pulmonary embolism
Provoked DVT leg
Provoked DVT arm
Provoked Pulmonary embolism
Acute coronary syndrome
Stroke
Arterial Thromboembolism
3- Repeated infections
None
Mild
Moderate
Sever
Viral
Bacterial
Fungal
Protozoa
Mixed
Upper respiratory
Lower respiratory
Upper urinary
Lower Urinary
Gastrointestinal
Cutanous
Disseminated / Multiorgan
4- Spontanous abortion
No
Yes
Number of abortions
5- Angioedema
No
Yes
Provoking factor
Laboratory data
Bleeding time
aPTT
Prothrombin Time/ INR
Fibrinogen
vW:Rico
FXI
FIX
FVIII
Other
Genotype Data
Are samples available for genetic testing
No
Yes
Has the parents been geneticaly tested for FXII
No
Yes
Has the patients mutations been analyzed?
Mutation was so far not investigated
Mutation analysis in progress
Mutation(s) is/are known:
If known, describe the mutation