Coming Together to Find a Cure

Privacy

ALD Connect is Committed to Protecting Your Privacy

ALD Connect is a large network of patient advocacy organizations and academic centers. The Coordinating Center is located at Massachusetts General Hospital in Boston and has years of experience collecting and storing clinical data for research studies. We know how to protect your privacy and our security systems are state-of-the-art. The information you give us will only be used to better understand and treat Adrenoleukodystrophy (ALD). We will never sell, rent, or lease your information.

We Protect Your Privacy

We make sure your name is not connected to any of your health information. The moment you join, you will get an identification code that will never be duplicated and will belong only to you. Anything you share with us will be linked to this unique identifier. This means that researchers and clinicians may see your data, but it will only be associated with an identification code, and they cannot use the code to determine who you are.

If researchers combine your data with that of other ALD Connect members, the dataset won’t include anything specific that can be linked to you or to anyone else in the network. For example, we might find out that 100 ALD Connect members say that performing pilates twice a week improves their walking symptoms. Although you may be one of those people, you cannot be identified.

And of course, if at any point you decide that you no longer want to be part of ALD Connect, you may opt out.

We Keep Your Health Information in a Secure Place

We also make sure that no unauthorized people will be able to see your information. Everything you share with us is securely stored in a database behind Massachusetts General Hospital’s firewall. We scan and monitor all systems regularly to prevent unauthorized access.

To see your own health information, you will have to log in to ALD Connect with a secure username and password. You must be very careful not to give anyone else your login credentials. If you are concerned at any time that someone may have your username or password, you should let us know immediately.

For a technical description of ALD Connect’s privacy and security system, please click here.