How do I get Dad on the Davenutide trial?

[AmyT]

Is it through the GP?

(Giggling a bit as Dads name is Dave... )

[judy1962]

We made an appointment at the University of Pennsylvania in Philiadelphia with Dr Murray Grossman. I believe that he is the lead investigator at that site. My husband's name is also Dave.

[PSPA_JillL]

if you follow this link to the clinical drug trials information it gives you the details of sites that are participating in the trials and details of the criteria, so you can see if it is possible geographically, and who you need to contact.

clinicaltrials.gov/ct2/show...

you might need to copy and paste this into your browser.

I dont know if you need to formally go through your GP but it would be a good idea to discuss it with them.

[Faiza]

Hi Amy,

I contacted the hospital directly (princess royal, Haywards Heath) as I found the contact details of the research team online. They checked my dad's medical notes as his consultant is at that hospital. We received a document outlining the invitation to participate and what it will involve. He's going in October to go through the screening process (assess his eligibility), so a bit of wait for us.

I know there's only three hospitals in the UK running the trials. Alongside the princess royal, there's Salford hospital but I cant remember the third one.

I'm not sure where you're located, but I'm happy to pass contact details on for trials at Haywards Heath.

Faiza

[jams in reply to Faiza]

hi faizi

have you now been on the drug and what are the results up to now

john

[capsey31 in reply to Faiza]

Good morning I wonder could you pass on the details to me please. My Father in law attends The queen Victoria hospital in Hayward heath but we have never heard of this drug. Do you know what the benefits of taking this medication are?

[PSPA_JillL]

The other UK site is Newcastle.

[dorothy-thompson]

Hi Amy, we also applied directly to Haywards Heath hospital but because we are out of their district, my husband's consultant was asked to send a referral letter with all the necessary medical information, which he duly did. We informed our GP as a matter of courtesy as hospital sends details of progress etc to the doctor. As I mentioned before, my husband starts the trials next month.

good luck

dorothy-thompson

[Faiza in reply to dorothy-thompson]

Hi Dorothy,

Could you keep me posted on how your husband gets on with the trials and the initial screening stage. We've been given a date of 6th October for my dad - seems like a long way off!

Faiza

[dorothy-thompson]

Hi Faiza

Yes, of course I will. It is a very involved process but - no pain no gain - so I've heard!

take care

dorothy-thompson

[suwils]

I intially sent an email to the Hurstwood Park Neurological Centre who replied quickly asking me to arrange for a referral letter to be sent to them from my local neurologist. Not sure if this is a good sign or not? SueW xx

[Brighteyesxxx]

Are there any trials available in Southern Ireland for my mum.

[Hidden]

Hi, Bron here..........my mother is 88 and is curious about trying Davenutide............we live in West Sussex, so Haywards Heath would be our nearest hospital. I am not sure whether it would be worth putting her through all the paperwork, asessments & waiting.................has anyone experinced ANY improvement, or change from using the drug? I don't want to sound negative but I am keen that the time she has left ( at her age) is as enjoyable as possible............I would welcome honest feedback. We see the neurologist at Worthing on 8th June but I could write sooner. Many thanks, Bron

[jams in reply to Hidden]

Hi Bron,#how are things now after u saw the neurologist did your mum try davunetide