Should I Enter a Study?

[Mtzu]

I was just told I qualify to enter a study. The people doing it are called ALSTDI and the study is called the Precisions Medicine Program. I have some questions.

1. Does anyone know if this is a good study to participate in?

2. If one participates in this study does it prevent that person from being considered for other studies?

3. Besides adding to the research are there any other benefits to being a part of this study?

4. If anyone else here has participated was there anything not disclosed (procedures, costs, etc.) that you were later surprised by?

5. Where's a killer place to stay in Boston near the study?

Thanks,

Michael

 

[Nikki J]

Hi Michael
Yes! Do the alstdi study. It looks really exciting. My appointment is in a couple of weeks. They are among other things going to do gene sequencing plus take your skin and use IPS technology. They are going to test various drugs and will continue to do so as new things become available. They share results. It does take time so whether it will help us even is questionable. I being FALS have hope that even if it is too late for me it will help my family members
It won't keep you from anything else
They won't charge you anything but all travel expenses are yours
What kind of place are you looking for? If you are as I believe mobile the ALSTDI lab is on the T line as is MGH where they take you for the blood and skin biopsy so you could stay near there or if you wanted could stay elsewhere in town. I would stay near the harbor maybe Marriot longwharf near Quincy Market and the North End ( if you get to come when the weather is decent they were booking months out)

 

[Blondrea]

Thanks Nikki! Do you happen to know if ALSTDE lab and MGH are close to each other? (Is MGH Mass General Hospital?)
Good luck in Boston!

 

[Nikki J]

They are 1 or 2 t stops apart and I am pretty sure a staff members drives you. For my appointment I start at tdi then go to Mass General ( yes MGH sorry) then free to leave from there. Think it can also be reverse order. As I said if you are mobile it is very easy. And the T stops involved are also wheelchair accessible if memory serves. I think it is also walkable distance for normal people. Thanks for good wishes I am excited about it. I find studies generally a good experience as I get to meet and talk to the research docs. This is different as you get to see the tdi lab and I think meet some of the researchers. Let me know if you have questions about the trip. You and Michael should be able to pm soon

 

[Mtzu]

Nikki,

Thanks so much for the insight. Very helpful. I'll continue the process. If you feel like sharing your experience after you go in a couple of weeks we'd love to hear and learn more.

Michael

 

[MaxEidswick]

>This is different as you get to see the tdi lab and I think meet some of the researchers.

pls tell all

 

[azgirl]

My sister and I are doing this study next week. We think it is promising research and are happy to participate.

 

[Mtzu]

Azgirl,

Good luck. If you would like to share any of your experience I think many of us can learn from it.

Michael

 

[Nikki J]

Curious if anyone has gone yet from here? Or has upcoming appointments? I have heard from people in other groups that they really found it worthwhile

 

[skipper66]

Good luck everybody. Keep us posted please on what you find out. Thanks for your participation.

 

[Nikki J]

Reporting back. Study visit is just what they tell you and is very easy. There is " homework" one week a month. For the visit you go to 2 places. Depending on the time slot you may do either first. For me part one was at ALSTDI building
A staff person goes over the study including the homework you do online after confirms your medical history and in my case did a family tree. Then she shows you the lab
They then take you to a satellite building of MGH ( not as near to a T stop as the main buildings) the blood draw and skin biopsy took less than 10 minutes. That is it
Homework is for 6 days one week a month you wear sensors on your extremities and three times during that period you do exercises( seated) using extremities in turn. repetitive movements. and you get a call ( at your convenience you request it) to record your voice once a month very briefly and you fill out the alsfrs on line once a month. You send the sensors back monthly ( fedex they give you everything you don't pay)

 

[azgirl]

My sister and I had our visit to TDI last week and all went smoothly. The TDI people are great and I think their Precision Medicine Program has real promise. I've had the sensors on for 5 days and they aren't too annoying. Skin biopsy sight almost healed.

It feels good to contribute!

 

[nebrhahe53]

Interesting I got an email from Lou do bs from ALSTDI. He will be in Texas next week and will come to visit me.

 

[MaxEidswick]

>Interesting I got an email from Lou do bs from ALSTDI. He will be in Texas next week and will come to visit me

neat!