Mayo (MN) vs. Emory vs. Johns Hopkins

[lwise]

My mom was just diagnosed last week, and we're considering these 3 clinics for confirmation/treatment plan and would like to know the collective thoughts, experiences, and opinions on the options.

In addition to thoughts about quality of care, we would be interested to know info about whether there are different trials, experimental treatments, etc. available at one clinic vs. another. Or does that even matter? (In other words, would all clinics be up to speed on trials, drugs, etc. in the event you might qualify, such that they could suggest a referral?).

 

[lgelb]

The few active ALS tx trials are all available for perusal on line. But for confirmation, I would not spend time or money to go further than Vandy (if your mom is in TN as well and wasn't diagnosed there) and save your resources for later if you find a trial that makes you want to travel, unless diagnosed is extremely equivocal and her differential includes something more treatable.
In terms of seeking out trials, you are your own best advocate -- most clinics focus more on supportive care than proactively steering you to trials other than those for which they are a site and sometimes not then. With limited enrollment and stringent inclusion/exclusion criteria, emotions run high and it's time-consuming work.
Assuming your mom and you end up in our unfortunate club, welcome and we will all try to help.

 

[sadiemae]

Emory is best for trials

 

[momap53]

Check out the NEALS website. They have lists of trials and where they're being held as well as inclusion and exclusion criteria.. They also host webinars and offer an opportunity to have questions answered via email.

The MDA also has a listing of ALS Clinics that they sponsor.

We've had several PALS from the Memphis area and I believe Rose has been to Johns Hopkins.

Be sure that your Mom registers at The CDC website for ALS. There are several surveys to complete that will be used for research purposes.

Welcome to the forums and good luck.

 

[lgelb]

Since Deb brought up the MDA and "approved clinic lists" come up from time to time, I will remind newcomers that both the MDA and ALSA have significant numbers of certified clinics, and you should look at both lists.
Second, the "only exclusive focus" positioning that ALSA uses to attempt to make its clinics/activities the most legit/meaningful is completely bogus from both the process and outcomes standpoint. The counter-argument writes itself.
Third, much insight and care that patients need on a day to day basis can be provided outside the confines and even advice of a certified clinic on either list, and as with all health services, it is wise to seek multiple resources as disease progresses. Each clinic has its preferred DMEs, manufacturers, protocols, etc. and it can be difficult for staff to see the forest for the trees as they operate within a fundamentally "treat and street" environment. Patients with competing risks apart from ALS are particularly well-advised to measure twice or more before "cutting."

 

[lwise]

Thanks for all the feedback. Definitely a lot of info to digest.

 

[Angiemackin]

That's difficult- my mom just passed from aka on 12/12 age had hospice care for 3 years at no out if pocket. We also had private pay CNA's caring for her.