Clinical trials

[nebrhahe53]

Looks like to get into clinical trials in Houston one needs to be seen by one of the neurologists at the ALS clinic there. Appel is a 3-4 month wait, I dont know about Dr. Simpson.
Probably need to be seen at any center that is having trials.

 

[Nikki J]

If you look on clinical trials dot gov and find a trial there should be contact information for each open clinical trial. If you contact that person they should screen you to see if you are eligible ( diagnosis, time since onset other medical problems anything like feeding tube are often criteria) and if you are eligible set up a study appointment for further screening. I do not believe there is any requirement that you be a patient of the study physician or their partners. Were you told that by a study coordinator?

 

[nebrhahe53]

I called up the contact number and the person there told me I had to be seen by the clinic before I would be eligible for any trials. If thats not true then they gave me the wrong info. Also for the DPS, in Texas only Houston does the implant for anyone outside of trials and again, you need to be seen by the clinic before they will do the implant.
This was new information for me too.

 

[MaxEidswick]

>Looks like to get into clinical trials in Houston one needs to be seen by one of the neurologists at the ALS clinic there. Appel is a 3-4 month wait, I dont know about Dr. Simpson.
Probably need to be seen at any center that is having trials.

check w/ dr luis lay ...

 

[MaxEidswick]

>I dont know about Dr. Simpson

there are 4-5, Simpson is great. You can also cut corners by going to Amy Nash at Willwbrook Methodist -- one of Appel's neuros.

 

[Nikki J]

Neil that just does not sound right. It certainly only says in the inclusion criteria for gilenya and dps which are currently open in Texas geographically accessible. Was the issue you have not yet seen an ALS specialist so they do not consider you confirmed diagnosis? I don't have personal experience of interventional studies yet but I have been in observational studies at 4 institutions without being a patient of any and I always just emailed or called and they took it from there. It almost seems illegal to require you to get care at their institution to participate. Does anyone have direct experience of an interventional trial at a different institution that your treating neuro?
As far as getting the dps in a nonstudy procedure it does make sense that you would need to become a patient of the facility and be assessed but that is different.

 

[MaxEidswick]

>gilenya

closed, I was rejected. Luis Lay is running it down here. The FFDA. :-(

 

[nebrhahe53]

well as I said this was the information I was given. I will call back again and mention that others have been seen without being patients. I have already been seen by 2 clinics and diagnosed with ALS at both. The # I called in Houston was 713-441-3420-seems wrong to me too

 

[MaxEidswick]

try 713.441.3760 or Karen at 441.5191 tues-thur

 

[nebrhahe53]

Tried your # Max- and they referred me back to the 3420 number. It looks like they are requiring all participants to be part of their clinic. If this is illegial someone should report them;

 

[MaxEidswick]

>Tried your # Max- and they referred me back to the 3420 number

try Amy Nash/Howe, ask for a referral -- 832.237.1000, studied under Appel, sent me there ...

 

[Nikki J]

Neil I don't know if it is illegal but don't think it is the norm. I found this webinar about how to get into clinical trials for als
Webinar: How to Get into a Clinical Trial | ALS Therapy Development Institute
Did not view it myself as it is long but since this is an issue for you thought it might be worth your time

 

[nebrhahe53]

Thanks Nikki. Funny, I have been doing much of what the people in the webinar say to do-call, email etc, but as of yet I have had zero luck.
As I am newly diagnosed, I would think I would be a prime candidate, but absolutely zero hits so far, even in my geographical area.

 

[Nikki J]

NEALS the northeast ALS Consortium was this on their website
Questions about Clinical Research?
Contact an ALS Trial Liaison

Call or email us with your questions
about clinical research

(877) 458-0631
[email protected]

You might want to browse their site too. They have webinars in fact they just had one on clinical trials today
ALS Clinical Trials | ALS Clinical Research | The Northeast ALS Consortium (NEALS)

 

[gooseberry]

Nebrhahe53's problem is similar to what we've encountered. It seems in both our cases there have been big waits for intake appointments, we cant access the clinic benefits without the intake neuro appt., and no clinical trials without that initiil appointment. Maybe the sites are changing how things are done for new patients?

I did have a meltdown with a schedular when our 7/16 appt was cancelled due to the rework of the clinic and was told Thanksgiving, maybe early December before my husband could be seen. I totally lost it. But he did get an appt for this coming Monday the 11th. I am not happy about the extra month but it really was the best that could be done. The rework of the clinic was"announced "at the end of June. I am wondering if it is a funding issue.