This is an INTERNATIONAL STUDY. There are several researchers currently working on a test that will detect Krabbe Disease at birth. In order to make newborn screening for this disease a reality we must show a prevalence rate for Krabbe Leukodystrophy. By participating in this study we are proving that this disease has an incidence rate that will warrant testing at birth. In the United States the incidence rate is 1 in 100,000 births. In Sweden it is 1 in 25,000 births. The Druze people of Israel have an incidence rate of 6 in 1000 births. Sicily Italy, Japan and Australia have also shown that there is a high birthrate of babies born with Krabbe disease in those countries. In finding children from all over the world we are able to show that this disease is much more common than once believed.
The second reason for the study is to expand awareness and support amongst families who have been affected by Krabbe. There is an optional box to check below to let us know if you would for this information to be provided to other families. Raising awareness about the disease helps the family to have more support, better care for the child and understanding of the disease. It also provides support to families who have already lost a child to Krabbe. Raising awareness is a key component in making Newborn Screening a reality.
Thank you for your participation in this study. I will contact you once the study is submitted.
Director of the Demographic Study
Child Diagnosed with:
Table 1 summarizes
molecular genetic testing for this disorder.
Residence of Family: (City/State/Country)
May we provide your information to other families?
We have begun to put forth the information into a displayable format on the internet. Time allowing I hope to have all the information available to date within the next several months. We will continue to make postings as we receive the data.