Ask the Doc: Q & A with Edward Kasarskis, MD, PhD

Edward Kasarskis, M.D., Ph.D. is Director of the multidisciplinary ALS Center at the University of Kentucky Neuroscience Center in Lexington, Kentucky, professor in the Department of Neurology at the University of Kentucky, and Chief of Neurology at the VA Medical Center in Lexington KY. 

Dr. Kasarskis

Q:  I have heard about the National ALS Registry but don’t know if I should enroll. I’m hesitant to give too much information when I’m not sure what will be done with it.

A: That’s a great question, and the answer is simple: Yes!  Enroll as soon as you can. The National ALS Registry is an important tool that will allow you to play a significant role in critical ALS research. And the system is designed to protect your privacy.

People often ask me: Did I get ALS because of the work I do? Is the disease more common is this part of the country? Could my lifestyle have played a role? And frankly, we don’t know the answers. The data we get from the National ALS Registry will help us answer these burning questions.

The Agency for Toxic Substances and Disease Registry (ATSDR) has been given a congressional mandate to establish an ALS National Registry and has created a web portal at the Centers for Disease Control and Prevention to enroll patients (www.cdc.gov/als).  It will collect key information that will contribute to our understanding of the disease.

The Registry will collect, manage, and analyze data about people with ALS across the USA. The greater the number of people with ALS who enroll, the more the collective data will tell us. We hope the information will help us better understand who gets ALS, what factors affect the disease, and improve care.

When you sign up, you’ll be asked questions about topics like your health, job, and family histories. The answers you give will be stored on a secure web portal.  Researchers will not be able to see any data that could identify individual patients, and any information that would be published would be about groups of individuals, and could not be associated with you, your particular situation, or your name.  I have participated in development of the Registry and I can assure you that the ATSDR takes privacy and the security of your information very seriously.  If I had ALS, I would not hesitate to sign up.

Some people have asked why physicians don’t just report this information themselves when a person is diagnosed with ALS. For a wide range of reasons, we have found that self-registration may be the most accurate and efficient approach. We’ve found that the questions you’ll be asked at the www.cdc.gov/als registry portal are almost as effective full chart reviews, which are difficult and expensive to conduct. Finally, only you know the details of your own work experiences, your hobbies, and your personal lifestyle. 

When you enroll, you will need to have a computer available to you and some confidence using it. You may want to ask someone you know to help you. Once you’re on the web page, you will create your own personal account. You will be asked for an email address so the Registry can communicate with you in the future. The questionnaire isn’t long, and it is set up in small modules so you can complete the questions in several sittings if you prefer.

The research will, without a doubt, add to the body of knowledge about ALS. This is a wonderful way for you to contribute directly to research about ALS. You can have a vital role in helping us find answers, all from the comfort and privacy of your own home.

If you would like to submit questions for a future Q & A, please send your questions to Amber Walters at awalters@alsa-national.org. Please understand that we won’t be able to address all questions and we won’t be able to respond to individuals personally.