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Genetic blindness

(7 Posts)
girlingerrupting Thu 21-Dec-17 17:12:35

I carry a mutation that means my sons may go blind does anyone know how you get into the world of clinical trials and help from doctors. From what I've read there is good progress in treatment but you must be early and monitored. But who would monitor you? My sons carry the LHON gene but I've no idea who to talk to?
Anyone who can help let me know

OP’s posts: |
Ideserveanamazing2018 Sat 23-Dec-17 03:11:10

Assuming you are in the UK, these links should get you started
www.nhs.uk/conditions/Clinical-trials/
www.ukctg.nihr.ac.uk/trials?query=%257B%2522query%2522%253A%2522lhon%2522%257D
I hope you find what you're looking for.

girlingerrupting Sat 23-Dec-17 22:43:36

Thanks smile

OP’s posts: |
MadameJosephine Wed 17-Jan-18 22:49:06

Some useful info here
www.rnib.org.uk/professionals/knowledge-and-research-hub/research-progress

Or you could try emailing them at research@rnib.org.uk.

Iggity Wed 17-Jan-18 22:55:31

If you look on clintrials.gov they list all trials which have been registered with the US regulatory body (FDA). You can search on the site per condition and see what's completed, planned, ongoing etc. I think they advise which countries are taking part in the trials. A colleague of mine has Leber's disease in her family. I can speak to her tomorrow for her view. We are both working in pharmaceuticals.

Iggity Wed 17-Jan-18 22:59:09

HI I've done a quick search for you limited to UK and LHON. Some still are recruiting. Best of luck.

clinicaltrials.gov/ct2/results?cond=LHON&term=&cntry=GB&state=&city=&dist=

Iggity Wed 17-Jan-18 23:02:43

I assume you and your sons are under hospital care. It will be your doctor generally who will refer you into a trial.

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