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Novavax trial thread number 3

997 replies

Frazzled2207 · 20/05/2021 21:22

Yet more chat about novavax, (un)blinding, general vaccine passport stress, approval (please please please) and more.
Those involved in other vaccine trials also welcome.

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Ragdoll4 · 08/07/2021 09:03

@PleaseReferToMeAsBritneySpears
Hoping that’s a sign of progress. Have you tried signing in again?

Frazzled2207 · 08/07/2021 09:10

@BG2015
Good for you- I’d be doing the same in your shoes. Hope you’re doing ok.
Mine is tomorrow but only 90% going for it.

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PleaseReferToMeAsBritneySpears · 08/07/2021 09:47

I get logged out every time and log back in with face recognition.

There's a new one there now! Valid until Aug 7th!

Cookerhood · 08/07/2021 11:30

It renews every time you log in (it says that on the screen Smile)

Monkeygirl68 · 08/07/2021 11:47

So, was contacted by the NHS vaccine service who left a voicemail, to see if I need ‘support’ about the vaccination programme. Clearly the trials people are not talking to the NHS service, so it still appears that I haven’t had a vaccine…….even though it’s on my GP app 🤦🏼‍♀️

Level75 · 08/07/2021 12:04

Personally I'm glad to heat that @Monkeygirl68 as it might enable my DH to get a new vaccine despite the GP having his novavax records.

werekitty · 08/07/2021 12:16

Just been announced that participants on clinical trials will be exempt from quarantine, have to see what that means

JosephineDeBeauharnais · 08/07/2021 13:23

@Monkeygirl68

So, was contacted by the NHS vaccine service who left a voicemail, to see if I need ‘support’ about the vaccination programme. Clearly the trials people are not talking to the NHS service, so it still appears that I haven’t had a vaccine…….even though it’s on my GP app 🤦🏼‍♀️
Yep, that’s the one that keeps calling me and said “never heard of it” when I explained about the trial Hmm
JosephineDeBeauharnais · 08/07/2021 13:24

@werekitty

Just been announced that participants on clinical trials will be exempt from quarantine, have to see what that means
Where? How? Do you have a link please? This would be fab!
Ragdoll4 · 08/07/2021 13:43

@JosephineDeBeauharnais
Grant speaking in House of Commons earlier. You’ll be able to view on BBC iPlayer.

Ragdoll4 · 08/07/2021 13:47

@JosephineDeBeauharnais
Info available here also.

Novavax trial thread number 3
Ragdoll4 · 08/07/2021 13:54

May be of interest.

Novavax trial thread number 3
Frazzled2207 · 08/07/2021 14:02

Def welcome news although for me the exemption from self isolation if a close contact is more important(although that apparently won’t be tied to the app).

Shapps was quite clear that we should be included (re quarantine) though I think it will broadly be dependent on the app working properly by end of July as promised. He also said that the app works for travel for 30 countries, suggesting that that also includes us but nobody on the Facebook group seems to know where that list comes from (prob includes falklands and places like that)

Finally got my letter (Stockport)

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Frazzled2207 · 08/07/2021 14:04

@Monkeygirl68

So, was contacted by the NHS vaccine service who left a voicemail, to see if I need ‘support’ about the vaccination programme. Clearly the trials people are not talking to the NHS service, so it still appears that I haven’t had a vaccine…….even though it’s on my GP app 🤦🏼‍♀️
Dr Baxter seemed to think that once the app was up and running these letters will stop. Not convinced at all. Obviously there has to be some dot joining but I don’t think the app “talks to” your medical records as such
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Ragdoll4 · 08/07/2021 14:14

Certainly sounds promising! Onus will be on individuals to frequently check countries entry rules.
Unless clear promise of advance notice of movement from amber to red is given, travel will be for those who can afford to take risk of payment for hotel isolation.
Suspect amber list could grow and green list diminish.

JosephineDeBeauharnais · 08/07/2021 14:29

[quote Ragdoll4]@JosephineDeBeauharnais
Info available here also.[/quote]
Thanks @Ragdoll4

Dreamer1989 · 08/07/2021 15:50

Norwich trial - just got this letter (no response to my unblinding request)

edited by MNHQ at OP's request

Please find response from the Principal Investigator – I hope this will reassure you

Dear Novavax Study Participant

Many thanks for your enquiry. We are receiving a lot of enquiries at present and unfortunately are unable to reply to them all individually. We are desperately aware of how concerned many of you are about several factors concerning your involvement in the study. Please forgive us but we have prepared a standard letter giving answers to the most frequently posed questions:

Firstly, certification of vaccine status via the NHS Covid App: Further to the letter from the Deputy Chief Medical Officer (Prof Jonathan Van Tamm) that we forwarded to you on 23rd of June. We would like to apologise sincerely that as of the 8th of July the Novavax vaccine is still not showing up as fully green on the Vaccine status page of the NHS Covid App. This is partly because the part of the NHS that handles this (“NHSX”) is still uploading NHS numbers and dates of Birth of all Novavax study participants but also partly because there seems to be a separate problem recording the second green tick. Thus some participant’s apps are showing them as green for “events” but not green for “travel”. We have raised this issue with Novavax and are also currently escalating this directly within the NIHR Clinical Research Network. Like many of you, we think it is not acceptable that you should not have the same access to events and foreign travel as people who have received a licensed vaccine such as Pfizer and Oxford-AZ. We are pushing as hard as we can on this issue and will update you as soon as we have any more news. We would like to reassure you that every time we have been asked to provide information in support of recording your vaccination status we are of course completing such requests in the fastest possible manner.
We do also encourage you, before planning to travel, to check any country-specific restrictions via the .gov.uk website as many destinations are using their own rules about travel, vaccination, PCR testing and quarantine. Finally, we are still hopeful that at some point in the near future the Novavax Vaccine will receive a license from the MHRA and at that point many of these difficulties should diminish rapidly.

Secondly, booster vaccines: As you may be aware some Novavax study sites across the country are running a Novavax booster study later this year. At present Norfolk and Norwich University Hospital is not a booster study site. However, there are ongoing discussions and this situation may change. We will, again, inform you immediately if there are any developments on this front. Outside of the study, despite all the discussions in the press about boosters, there is not any official NHS plan for booster doses at present. It is thought likely that from September onwards booster doses may be offered to the over 70s and those in certain vulnerable groups but we would stress that this is not official yet.

Thirdly, expenses: several of you have asked if Novavax will cover the costs of PCR tests for travel where these are incurred because of delays in getting your vaccination status recorded and displayed in the NHS Covid app. Regrettably at present, after presenting this to colleagues at Novavax, the answer has thus far been that they will not. We are continuing to work on this issue and will update you as soon as we have any news

As ever, we cannot thank you enough for the amazingly altruistic act of offering to take part in this crucial piece of research. You have done and are doing a very important thing to help the country and possibly humankind as a whole, combat this awful disease.

We will be in contact again as soon as we have further news.

Cookerhood · 08/07/2021 15:53

@Dreamer1989 did you mean to leave your name in the cut & paste?

Dreamer1989 · 08/07/2021 15:57

Oops no, I dont know how to delete the post! Argh! Thanks

Frazzled2207 · 08/07/2021 16:21

@Dreamer1989

tbh that is quite a sincere letter and they're clearly trying to be as helpful as they can be.

the whole "separate problem recording the second green tick" sounds like a bit of a joke though, surely that's a simple IT issue nothing to do with novavax

Disheartening how useless novavax itself are being ,especially around PCR tests refunds etc. Not exactly a good way to convince people to join in their clinical trials is it.

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QueenOfThorns · 08/07/2021 17:23

I got this email yesterday:

Dear Participant,

We have received your email/ phone call about the concerns you have regarding the Novavax trial, particularly in relation to your vaccine status on the NHS app. I am sincerely apologising on behalf of the study and have made contact today with PPD, who are the Clinical Research Organisation (supporting the study sponsor Novavax). We have also asked for urgent escalation of this to Novavax to clarify what we can expect. We anticipate this clarification to be sent by email and we promise that we will send another email this week with the response we have been provided with.
Once again, I know it is of little value but I am really sorry on behalf of this study for your current experiences.

Best wishes,

Dr Baxter and the Stockport research team

Level75 · 08/07/2021 18:29

The changes today make little difference to us. For the country we want to travel to it's double vaccine or stay in your hotel room for 2 weeks. Not my idea of a holiday.

QueenOfThorns · 08/07/2021 19:48

Slightly worrying, but I just read this on the BBC website: ‘Mr Shapps said a full vaccination means "14 days have passed since your final dose of the vaccine" - and only vaccines given by the NHS will count.’

www.bbc.co.uk/news/uk-57763173

JosephineDeBeauharnais · 08/07/2021 20:41

Thirdly, expenses: several of you have asked if Novavax will cover the costs of PCR tests for travel where these are incurred because of delays in getting your vaccination status recorded and displayed in the NHS Covid app. Regrettably at present, after presenting this to colleagues at Novavax, the answer has thus far been that they will not
What a bloody cheek. Not only have we put our actual bodies at their disposal, we’re expected to pay for the privilege Angry
I will never take part in anything like this again. Altruism only goes so far.

Frazzled2207 · 08/07/2021 21:12

[quote QueenOfThorns]Slightly worrying, but I just read this on the BBC website: ‘Mr Shapps said a full vaccination means "14 days have passed since your final dose of the vaccine" - and only vaccines given by the NHS will count.’

www.bbc.co.uk/news/uk-57763173[/quote]
Not too worried about this (yet). My vaccine was given by an nhs nurse. He made a specific point of saying that those on clinical trials would be included.

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