ALSUntangled (ALSU): A New Global Scientific Effort to Help PALS Evaluate Alternative and Off-Label Therapies

Richard S. Bedlack MD PhD MSc
Duke and Catfish Hunter ALS Clinics

Patients with ALS (PALS) often consider alternative or off-label therapies (AOTs) they read about on the internet.  It is extremely difficult to get accurate information on the risks and benefits of these.  A new initiative called ALSUntangled (or ALSU) has now been launched to try and help.

There are 3 parts to ALSU:

A. Communication from PALS into ALSU regarding AOTs they are considering;

B. A “war room” in which these AOTs are investigated by ALS Clinician Scientists

C. Public release of the results of the investigations both online, and in a summarized form in the Journal. 

Relatively new internet sites are being used to accomplish these, including Twitter and NING.  Step by step instructions on how to use ALSU will now be provided.

PALS who want to use ALSU should do the following:

1. Sign up for a free Twitter account at http://twitter.com/

2. Send us your question about an alternative or off label ALS therapy you are considering by using your new Twitter account (via a short text message called a “tweet”). As long as your tweet has the term ALSuntangled in it, we can find it.

3. Sign up to follow us on Twitter so you get all of our tweets, too. You can do this by going to http://twitter.com/ALSUntangled, logging into your Twitter account from there, and clicking the “follow” button.

4. Watch for the results of our investigations, which will be announced via twitter, and appear as “free access” articles through the journal “Amyotrophic Lateral Sclerosis.”

ALS Clinician Scientists who want to use ALSU should do the following:

• Sign up for a free Twitter account at http://twitter.com/

  2. Send us your question (a "tweet") about an alternative or off label ALS therapy you are considering by using your new Twitter account. As long as your tweet has the term ALSuntangled in it, we can find it.

  3. Sign up to follow us on Twitter so you get all of our tweets, too. You can do this by going to http://twitter.com/ALSUntangled, logging into your Twitter account from there, and clicking the "Follow" button.

  4. If you are a member of the ALSRG or WFNALS Research Group, please email bedla001@mc.duke.edu for an invitation to the NING in which we share our collective knowledge and experience related to the alternative and off label therapies we hear about.

  5. Once you get the invitation, sign on to the NING and join our discussion forums!

Full descriptions of the program, as well as copies of the above instructions can be found on the World Federation of Neurology ALS Research Group Website (www.wfnals.org).  We hope this new initiative will empower PALS to make the best possible decisions regarding their ALS treatments.  If you have any questions, please email Dr. Bedlack at bedla001@mc.duke.edu.