URGENT MESSAGE FOR CANAVAN FAMILIES!
Please help by forwarding this to
all the other families affected by Canavan disease.
If you want
treatment for your child, or are unsure, or just want to help another child with
Canavan disease then please fill out this survey and then forward it to other
families or groups where they might see it.
This is the only International Patient Registry for Canavan disease we need it
join the International Patient Registry for Canavan Disease
Please Click on this link to enter your
registry is the only database where patients enter and own their own data.
The diseases that are going to get to the clinic ahead of Canavan have all used
The registry is maintained by 'PatientCrossroads'
- they specialize in helping small organizations advocate for patients with
relatively rare diseases. Their
platform utilizes the same level of security and privacy as the NIH and adheres
strictly to all HIPAA laws. Please go to this survey and fill it out on behalf
of your child. It takes approximately 20 minutes.
YOU WILL RETAIN OWNERSHIP OF YOUR OWN DATA and can
withdraw your information at any time. We need to locate as many patients with
Canavan as soon as possible and get the information into a database so Pfizer
can see that there are enough patients living with Canavan disease to support a
trial. We have no ownership of the data. The survey is patient-entered and they
will also retain ownership of their own data and can withdraw at any time.
will be instrumental in helping us all gain a better understanding of the
incidence and prevalence of Canavan disease. We will also have the ability to
recruit patients for any clinical trials and aid in prescreening to determine
Canavan Research Illinois