ACP-196 trial in EU New here, need Ur help

[clemens]

I am in a clinical trial in Salt Lake City Utah, receiving 200mg/day ACP-196 since may 2015 with good results and almost no side effects.

As I am moving to Germany I would like to continue this trial somewhere in the EU, preferably in Oxford, because I have a son who lives there.

Last year a representative of Acerta Pharma told me that there were trials going on in London, OX and Milano in the EU. The Acerta websitew is down and there is no one at Acerta or Astra to contact.

Can you help me with some information?

Thank you Clemens

[Cllcanada Top Poster CURE Hero]

What is your current trial number? Try a search on

clinicaltrials.gov

many international trials are listed...

The German CLL Study Group is running many clinical trials, and the German Group is a world leader in CLL research

dcllsg.de/index.php

~chris

[ccm47]

Wow, as somebody who has successfully made the transition from the UK to France for regular IVIG treatment following FCR I take my hat off to you!

The paperwork trail you are going to have to go through as an American in Germany and the UK is going to be lengthy, and probably costly even if you are eventually reimbursed for the medical expenses.

As I see it, you need to:

1. Register with German health services as a resident and for everyday medical treatment.

2. Get their equivalent of a UK S2 for planned treatment abroad from Germany. Also an EHIC for unplanned treatment elsewhere in Europe.

3. Get your chosen hospital (which is NHS?) to accept you as a patient on the trial before your supply of drugs run out.

4. Sort visas to enable you to fly regulalry between Germany and the UK, which is not a Schengen country.

5. Ensure you have access to means of payment for NHS services that do not fall into planned or emergency treatment categories e.g. as a non resident you may be expected to pay for scans or tests which are desirable but not essential or emergency.

In addition:

6. Prepared to cope with: security screening delays at airports, general transport delays, hospital clinic delays and appointment postponements followed by the unexpected need for hospitalisation. Therefore you may become reliant on booking last minute tickets back to Germany or risk losing money on pre booked flights which you never make.

7. Take measures to reduce the risk of infection by other passengers and of course patients. Europeans probably have different strains of germs going around to those you are used to.

I wish you the very best of luck.