PPMD Community

Moving to the US. Which city could be a good place for Duchenne management?

Hi All,

I am moving to the US, and hoping to enrol my 4 year old son for etiplersen phase 3 trial. We have an option to move to any city of choice. Can you please suggest which could be the best city to move in to attend to my son's regular checkups and for phase 3 trial.

Many Thanks.

-Rahul

Favorite

0 members favorited this

▶ Reply to This

Replies to This Discussion

Permalink Reply by Keith Van Houten on June 30, 2014 at 7:41am

Total guess, but I would think Columbus, Cincinnati,. DC or Baltimore, Boston, LA, would be on the short list of potential trial sites.

The other approach is to live near a hub airport, so you can get lots of places easily. Like Atlanta.

▶ Reply

Permalink Reply by Jennifer Shumsky on June 30, 2014 at 10:14pm

I believe the University of Iowa is going to be the first center starting the phase 3 trials, and they have a great duchenne center there. They are on the list to be a certified duchenne center in the next year.

▶ Reply

Permalink Reply by Ofelia Marin on July 2, 2014 at 8:45am

Jennifer, How do you know that they will be 'the first center starting phase 3'? Have their received IRB approval yet?

Rahul, your 4 yo does not qualify for the confirmatory trial due to his age. He does qualify for the 4-6 yo trial (20 boy trial) planned to start after the confirmatory.

Jennifer Shumsky said:

I believe the University of Iowa is going to be the first center starting the phase 3 trials, and they have a great duchenne center there. They are on the list to be a certified duchenne center in the next year.

▶ Reply

Permalink Reply by Rahul Singh on July 7, 2014 at 4:58am

Thanks Keith, Jennifer and Ofelia for your suggestions. My mistake... We are looking guard to 4 - 6 yo trial only and not phase 3 confirmatory trial.
We have shortlisted Columbus based on your suggestions and some research but at the same time considering Chicago as well.
Thanks again!

▶ Reply

Permalink Reply by Rupjani B on July 14, 2014 at 7:21am

Hi Rahul!

I was in US when my son was diagnosed at the the age of 5. Now my son is 8. We are back in India at the end of 2013 . We are planning to move to US once again this year to take my son either in Halo trial ( I'm not sure enrolling is closed or not) or in Summit's Utrophin trial. I'm not sure where are you at present. If you are in India you can call me at 91 8420375709.

Good luck to you and your family.

Rupjani