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 registration form?

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 abbreviated form.