ALS Advocacy

ALS Advocacy
Lou Gehrig's Disease - Motor Neuron Disease - Amyotrophic Lateral Sclerosis
Thought it had been cured by now? Still no known cause. Still no cure. Still quickly fatal. Still outrageous.

Tuesday, July 26, 2011

After All, It's All About The Patients

In the last few days patients have continued to lead the way.



The Good News



  • http://www.clinicaltrials.gov/ has traditionally been the best database of clinical trials, yet it was not completely accurate on the eligibility window for one ALS trial. Since ALS patients are seldom diagnosed quickly (that's a whole other story), they often have very little time in their clinical-trial eligibility windows by the time they know they have ALS. It's a big deal if a trial will accept patients up to 36 months (rather than 24) from onset. Patient communication to the trial sponsor resulted in an important update to an important clinical trial's listing -- Neuraltus NP-001 -- http://www.clinicaltrials.gov/ct2/show/NCT01281631?term=neuraltus+amyotrophic&rank=1


  • A new location was announced for the same clinical trial and within hours, our patient mapmaker had updated his work and communicated it to dozens of ALS websites.


  • Several patients chided ALSadvocacy for not being more specific when referring to an important phase III trial in a prior posting. Here you go. -- Biogen Idec Dexpramipexole http://www.clinicaltrials.gov/ct2/show/NCT01281189?term=dexpramipexole&rank=3


  • The facebook commentary regarding clinical trials has increased significantly. Patients are encouraging each other to "try out." Patients may or may not qualify, depending on how much damage the ALS has already done to them. The support and information being exchanged on facebook are impressive.

  • Patients are hearing from their own trial coordinators of an uptick in inquiries based on patient referrals.


  • Some trials provide unadvertised assistance with travel expenses. Patients are learning to ask.


  • Finally, there are rumblings that some ALS organizations may finally be working together to make a single best information source of clinical trial possibilities. Based on past performance, that's a refreshing new goal to prove that it really is all about the patients. If a reliable, up-to-date, easy-to-use source of ALS clinical trial information emerges, then there may still be hope that all organizations might cooperate on having one excellent source of information. Patients have been begging for inter-organizational cooperation for years. This is a chance to help patients and leverage resources.

The Bad News




  • There continue to be reports of large groups of patients at support groups and clinics who are not being informed of clinical trial options by their organizations and healthcare professionals.


  • The online information regarding clinical trials has been updated on some ALS organization sites but not on others, and obsolete information is worse than no information! ALSA chapter sites are not accurate at this time. There is an old saying that everything is harder with ALS, and this is an ironic source that reinforces the adage. ALSadvocacy hopes that organizations will remove the red-herring information and simply supply a link to http://www.clinicaltrials.gov/ct2/results?term=amyotrophic&recr=Open It's all about the patients, right? It seems unconscionable that a patient might miss a trial opportunity based on wrong information on a trusted organization's site.


  • Not all trial locations supply email addresses in addition to phone numbers for the contact people. A disease that steals the ability to speak would be served well with more appropriate communication options for patients to inquire about clinical trials.


  • Clinics that are holding trials may occasionally be forgetting to tell patients about other clinical trial options that are available elsewhere. In the same vein, are not-for-profit trial sponsors forgetting to tell patients about trials sponsored by for-profit pharmaceutical companies?

The Bottom Line

It should be all about the patients. There are some current clinical trials that actually may provide improvements to patients, but we'll never know until the trials are filled and completed. There are therapies that will be huge if they live up to their promise, but only the data will tell. Patients are leading the way in getting the information to their peers so that the seats will be filled. Our ALS and healthcare delivery and clinical trial organizations have a perfect opportunity to prove that they are all about the patients. Simply listen to your patients and act, quickly, please.


2 comments:

  1. From a msg posted on the forum at www.patientslikeme.com just this morning --
    "I asked the research folks at my clinic and they had never heard of np001."

    This is nuts!

    ReplyDelete
  2. Thanks, Neuraltus ! Email addresses have been added to all their clinical trial locations at www.clinicaltrials.gov .

    ReplyDelete