Questions concerning the registration form
Should there be some confusion as to what information is being requested
in either the Laboratory Registration form or the Disease Registration
form we have provided answers to some common questions below. Should you
have additional questions, please do not hesitate to contact us
Do I have to provide all of the information requested in the forms?
No. The information requested in the two forms should be provided to
EDDNAL only at the discretion of each laboratory. EDDNAL requests this
information to enable physicians (and other health-care professionals)
not only to access testing for rare inherited diseases but also to make
more educated decisions regarding where to have their testing done.
What is the difference between the long and shorter versions of the disease
The shorter version provides only the basic information on the diseases
for which a laboratory tests. The longer version, however, provides a
more complete picture of the sorts of analyses that a laboratory performs.
As such, the longer version is of greater benefit to physicians consulting
the directory. However, in recognition of the fact that completion of the
longer version requires a greater time commitment, we have provided the