Opportunity to participate in observational research

[Nikki J]

Some of you may know about ALS TDI's Precision medicine program. The first phase required a trip to Massachusetts and involved blood tests and a skin biopsy as well as ongoing monthly activities that you do at home. Several of us participate in that but others were not able to

Phase 2 is beginning. It consists only of the home portion- no travel. They ask you commit to at least 6 months of home activities
Read about it here
Precision Medicine Program 2.0 | ALS Therapy Development Institute

This is not a treatment trial and you can do it even if you are in a treatment trial or trying supplements

 

[GregK]

Thanks Nikki. I just signed up and came here to share the link.
Ya beat me to it!

 

[Nikki J]

Thanks for participating Greg! I might have had a head start. TDI emailed the info to those of us in pmp1 this am

 

[azgirl]

I would encourage everyone to participate. TDI is doing good work and it is interesting to track my Actigraph data with my self reported alsfrs numbers.

 

[GregK]

FYI.

They will be doing the genome sequencing!

 

[Nikki J]

Oh that is great! Fyi it took months to get results for both Kay and me ( we went the same month). I think it was 6 months but that was longer than normal I believe. Are they also testing for c9? That does not show on the regular sequencing so my testing looked genetically normal ( wish it were so). I believe they added c9 testing later on though and went back and tested everyone ( except those known to be positive)

 

[Vincent]

I have just submitted my first questioneer. Now we find out if this is just for ya'll Yanks.
Vincent

 

[BlueTrain]

Hi Vincent - you should be good as I just started the study. In fact, the blood sample and skin biopsy can be collected by your GP (or a local nurse) and sent to ALSTDI in Cambridge. (although as Nikki pointed out, maybe they do not require these samples for PM 2.0.)

 

[Nikki J]

It looks like they will ask for samples only from some participants based on your phenotype and or possible genotype. Someone in one of my FB groups posted they accept PLS diagnoses too though this is second hand info

 

[njk0407]

I signed my husband up for this. Thanks!

-Nikki

 

[Buckhorn]

Thanks Nikki. I also sent a request to participate for my husband.