F-HYPDRR Database

(as suggested by Colin and Lynne Steeksma, in the F-HYPDRR mailing list)

[Please print this questionnaire directly, or, if you save this file as source code, then you can print it out offline on your printer. Join the mailing list to find out how and where the information is being collated and where you can send your own data]

 

Current Date:

 

Gender: M/F

 

Current Age:

 

Age at Diagnosis:

 

Familial or Spontaneous:

(Did you inherit the condition, or are you the first one in your family to be affected?)

 

Others affected in family:

(Can you provide a similar set of entries for them?)

 

Current Height and Weight:

 

Current Cranial Circumference:

(With a tape measure, measure the distance around your head at the forehead)

 

Treatment :

Medications and dosage of each:

(how much and how often)

 

Number of teeth abscessed/extracted:

 

Number of osteotomies:

(and whether tibial or femural)

 

Final Height and Weight for those who have matured:

 

Geographical info:

(such as type of area living in and that of parents if familial)

 

Occupational info:

(Occupations of parents of spontaneous cases or at the point it became known to be familial

eg: your great grandmother was first known to have the disease, and her parents were coal miners)

 

Any other information that you feel might be important in the database: