Frequently Asked Questions About the New ALS Disease Registry

In order to help doctors and scientists find treatments for ALS, the Agency for Toxic Substances and Disease Registry (ATSDR) has developed a national registry to collect information from people living with the disease. Here is a bit of background on the new registry, which opened in October.

What is a disease registry?

Disease registries are systems designed to gather and maintain information about people with specific conditions or exposures. Some registries are limited to certain geographical regions or populations, such as veterans; this registry will be the most comprehensive effort so far to collect data about Americans living with ALS.

What is it used for?

The information in a registry can be used to learn many things about who gets the disease and why, and what kinds of interventions are helpful, with the ultimate goal of improving research. A registry also can give valuable information about a disease to patients, family members and health care professionals, including information about available services and upcoming clinical trials.

According to the ATSDR, some of the information the ALS registry could provide includes:

• an estimate of the number of new ALS cases each year;

• an estimate of the number of people who have ALS at any given time;

• better understanding of who gets ALS and what factors affect the disease;

• the connection between ALS and other motor neuron disorders that may be confused with ALS, misdiagnosed as ALS, or in some cases progress to ALS; and

• ways to improve care for people with ALS.

Isn’t there already an ALS registry?

There have been a couple of attempts over the past decade to establish registries of people diagnosed with ALS — including one supported by MDA called ALS Connection — but those registries were incomplete, collected different data sets and are now closed.    

In 2008, Congress passed a law providing for the creation of a comprehensive, national ALS registry. The ATSDR (part of the Centers for Disease Control and Prevention) has been working for the past two years to get the national registry up and running.

The ATSDR’s first step was to conduct pilot projects with partners in several states to determine the best way of organizing the registry. The ATSDR then had to get approvals from a number of government agencies and other groups in order to ensure that only necessary information would be collected and that the information in the registry would remain private.

How will the ATSDR registry work?

In order for the registry to be as comprehensive as possible, existing data on people with ALS, including information from the pilot projects and national health databases, will be contained in the new registry. Information entered in the registry will be automatically checked against information already entered to avoid duplications and mistakes.

Since the most complete and accurate disease information is usually obtained from patients, people diagnosed with ALS will be able to register themselves and have access to their own private information. Authorized caregivers also will be able to enter information on a patient’s behalf.  

What about privacy concerns?

Data in the registry will be encrypted, and no one but the patient and his or her authorized caregivers will have access to that person’s private information. Identifying information will be stripped from the data before it is used for any research or analysis purposes.

How do I access the registry?

To get more information about the registry and/or to learn how to add your information, please visit www.cdc.gov/als.