Where Does My Data Go?
Enroll-HD will make data available to scientists all over the world while protecting the privacy of study participants. This works through a process of double coding. All data collected as part of the study is maintained separately from your own medical records. Your name is never entered into the Enroll-HD database. Instead, your data is associated with a 9-digit code, the HDID. Then, before any of this information is made available to research scientists, other identifying data such as your birthdate and location are removed, and it is assigned a new ID number separate from the HDID. This way, data can be shared widely, but people’s identities are still concealed.
It Starts With You
Your health information is recorded by clinic staff and put into a computerized “electronic data capture” system separate from your medical records.
To protect your identity, your name is not included in this database. All the health information taken down for Enroll-HD is linked only to a 9-digit “HDID.”
The information is stored in a secure server in the EU, the same systems that banks and hospitals use to protect sensitive information. The EU was chosen because it has the highest standards for data protection.
Keeping Secrets Safe
Before researchers can see it the data are further stripped of identifying details, such as your birthday or where it was collected.
A New Identity
Each record gets a new ID number and is moved onto a new server, for extra protection.
Putting Data to Work
Now, researchers studying HD can apply to get access to the data.
This story was originally published in the Autumn 2013 issue of Enroll!