Patients like to take part in research but d... - Vasculitis UK
Patients like to take part in research but don't know how. Help us to understand what the problems are. (Multi-choice) Leave any comments
Suzym2uModeratorVasculitis UK132 VotersPlease select all that apply:
Trials are always over by the time I get to hear about them
If you look at the VUK website from time to time we do try and keep up with the latest information via the news page such as this one
vasculitis.org.uk/news/vasc...
Or by the research pages
vasculitis.org.uk/research/...
vasculitis.org.uk/research/...
Or by the professional page
Happy to help with research
Anything to help understand this dreadful illness
Would like to help
When speaking to Consultant he feels due to having more illnesses than just Vasculitis, it will be too confusing, which long term illness is doing what?
As long as you met the eligibility criteria you can take part...
Would like to take part in Research to help find a cure for vasculitis.
Would like to help. I was really lucky that my GP recognised that I needed a hospital referral on my first visit to her. The consultant ordered countless tests before treatment could start. With more research, hopefully more people would have a quick path to diagnosis
There is more research if you follow this link it will give you more info vasculitis.org.uk/research/...
Husband usually takes part, he doesn't always know he is, I tell him where to sign!! It's usually just your agreement to have data used, sometimes extra blood tests.
I am on The Biobank and The Rudy Study. These are now done by email for updates.
Just waiting to see if i am selected for the feasibility FAB-V Study which was posted on here earlier this month.
Whatever research is going i would always see if i can help, i have been declined on a few as you cant be on medication that is the only downside.
This is the link for the feasibility study if anyone is interested, it is taking place at the Queen Elizabeth Hospital Birmingham.
Two of the studies were in Birmingham and they require lots of travel so makes it difficult to take part. If I knew about ones in leeds that would be much better.
I am sure Leeds are a centre which is taking part in the UKIVAS registry , you could make enquiries here is the link vasculitis.org.uk/professio...
Always help with trials if I can. Sometimes because of other meds I cannot take part. Or because of one of the other illness that I have. Don't always know what could be available.
Anything that may help I will do if I am able.
I would love to take part in trials in auto immune vasculitis and relapsing polychondritis and any other auto immune conditions
I found criteria for trials were restrictive so although I wanted to be in one study I didn't qualify.I did take part in another about treatments for fatigue in pbc, a liver condition and I found the process very good.Generally I find it quite hard to find out about trials my consultant doesn't mention them I have to research for them myself and it can be hard to find out about them and their recruitment criteria.
John and I wanted to take part in research a few years ago at Birmingham hospital , me as a Healthy control and John as the vasculitis patient. I was accepted but John was refused as his vasculitis was thought not to be stable at the time and he was also Suffering from the after affects of a cold. He was very disappointed, but came with me when I took part, and was very enthusiastic, not sure I was quite as enthusiastic , it was quite a heavy day.. but it was certainly worth taking part. Birmingham are doing some more research at the moment if you look at this page it s called the FAV-V Trial at the bottom, click on the link for more details. vasculitis.org.uk/research/...
I was asked (at Addenbrooke's) before I even had the full diagnosis. Still participating.
This is not usual , but Addenbrookes is a multidisciplinary centre for treating and managing Lupus and Vasculitis so many clinical trials take place here. Hope all is going well?
It is the TRIAD Study, which simply involves me giving a bit of extra blood from time to time at the same time as clinic visits. I had three massive infusions of steroids followed by 6 infusions of chlorophosphamide and now two of Rituximab. Progress has not been quite as good as hoped so I'm having a PET-CT scan tomorrow to check that some other infection is not masking the Vasculitis indicators. (That's as I understand it anyway!) Otherwise bearing up - the foot drop prevents normal driving so I've splashed out on an automatic with hand control.
Consultant changed his mind and said I wasn't needed
John is always willing to take part in research but he often does not meet the criteria or is not well enough at the time.
I have informed my Consultant that I am willing to take part in any Trials or Research regarding Granulomatosis with Polyangiitis ( formaly known as Wegeners Granulomatosis ) so he is aware of this. He stated he would contact me if he became aware of any that I would be suitable for.
I would like nothing more than to be part of something that helped understand this condition more.
Is your hospital/consultant signed up for the UKIVAS register ? vasculitis.org.uk/professio...
Happy to take part in research projects but not always possible as live in Australia
Travel would be a problem
Happy to do trials
Not diagnosed suspect have when research into my condition as could me Central nervous system ? Written to main Drs who research - no replies.Often their are administrative persons blocking using criteria they don't understand .The NHS seems to have a policy to block research directing the Doctors via directives based on questionable research.ASs for a tier system? In fact NHS damages Health by poor research just treat patients as guinea pigs with Watchful Waiting frequently too late!!!!?
Sorry, but I would have to disagree. Research is not about the diagnostic process for an individual.
Vasculitis UK are funding research at the moment for CNSV. (1 per million here in the U.K.) so there are very limited numbers. vasculitis.org.uk/research/...
There are certain criteria to meet when taking part in research and the first and foremost is a definite diagnosis of vasculitis.
The doctors we know who have a special interest in vasculitis work very hard to find better, kinder treatments to treat and manage all the 18+ types of vasculitis.
My husband John was diagnosed 16 years ago when treatments and medications to manage vasculitis were extremely limited. The consequences from John taking oral Cyclophosphamide over a long period resulted in bladder cancer for my John. Because of research and the hard work from doctors and research doctors there are now many better treatments to treat vasculitis. These treatments include Rituximab and biologics such as Tocilizumab. Rituximab was approved by NICE in 2014. Tocilizumab has just been approved to treat TAK. John was part of the process and consultation for these drugs.
Multidisciplinary centres for treating vasculitis such as Addenbrookes, Birmingham, Aberdeen and Hammersmith carry out clinical trials for vasculitis most of the time. The patients certainly are not guinea pigs, they receive some of the best care here in the U.K. But are also asked to take part in clinical and medical research and most do this willingly.
When they do clinical trials they are using drugs that have been developed by pharmaceutical industry. It costs typically one billion dollars to get a drug from the lab to the shelve in the hospital pharmacy.
Obstacles - kept sending me letters but when I rang they couldn't find a suitable appointment slot so they said they'd ring me back but i just receive more letters. They could organise this more effectively with my consultant as I have consented to the research.
It is difficult, some research studies are carried out by hospitals and doctors such as the International DCVAS research study , second study down on this page vasculitis.org.uk/research/...
And also the UKIVAS registry vasculitis.org.uk/professio...
Other studies are carried out with individual patients such as the RUDY study , details are second from the bottom of this page
I never hear about them but would be happy to help if we can find better ways to cure wegeners altogether or find a way to diagnose early symptoms and understand the disease x
Vasculitis UK have been funding research into early recognition and diagnosis look under research funded 2015/2016 vasculitis.org.uk/research/...
The travel time and the location make it difficult
Diagnosed with Churg Strauss in 2015,I was invited to participate in kidney research, not long after being discharged from Derby hospital. However, I felt that I could not cope with the travel to Nottingham,and the long MRI scans involved at that time.
Through Vasculitis UK I have been interviewed by GLaxo Smith Klein by their rare disease rep, to help with their understanding of the patient experience of the condition.
Am happy to help as and when I can, but it looks like most things would involve travel. GSK actually travelled up to me from Brompton.
When I first saw my vasculitis consultant he was almost beaming with delight at having a new "victim" to sign up for his several research projects!
I am the third member of my family to develop GPA and understandably am concerned for my younger relatives. Whilst in hospital I consented to my DNA being used for research purposes. I also volunteered to take part in genetic research at Addenbrooks even though it is a long way from where I live. I found it disappointing that I never heard anything after I applied. I also got no response at all to my email a few weeks later asking whether my application was successful. Clearly it wasn't but a little communication would have been welcome. A doctor at Manchester Royal was more helpful but couldn't progress genetic investigation as I had no DNA from my now deceased relatives with GPA. The hospital where my relatives died could not help in locating their tissue samples as their records could not be found: annoying because kidney biopsies were carried out - unfortunately 30+years ago. In short yes I am most willing to help but I am a bit sceptical!
There is genetic research happening at Addenbrookes and I will give you a link to make further enquiries about your application.
cuh.org.uk/vasculitis-and-l... I think Dr Ken Smith and Dr Lisa Wilcocks are the leads.
There is now a BIO bank of blood and tissue samples ( stored ) at very low temperatures, for future use in Gene Mapping, however this would not have existed 20/30 years ago when genetic testing was still in its infancy.
I have been diagnosed with Vasculitis, the only cure is Prednisolone but i am alergic to this drug as it causes many side effects on me. Am looking for an alternative, please advise. Elaine
What type of vasculitis have you been diagnosed with.. ? If you don't mind me asking
Large vessel vasculitis. Eandelaine
At the moment NICE are looking at the possibility of approving Tocilizumab for GCA but this might take a few months yet, and there is no guarantee it will be approved.
yes would like to help elaine
can you suggest anything? thanks Eandelaine
Large vessel vasculitis Eandelaine
Hi Elaine,
Unfortunately prednisolone is the mainstay of treatment for large vessel Vasculitis but Methotrexate and Mycophenolate can be used as well.
Have you discussed this with your Consultant?
One of my problems is travel. We have no transport so rely on patient transport. Plus multiple conditions make it difficult to prioritise which condition to concentrate on for research,
If you look on the VUK website we always try to keep up with the latest trials and also fund some or co fund some
vasculitis.org.uk/research/...
Yes I would be willing to take part in a research opportunity. I have Rhumatoid, osteoarthritis, and Vasculitis arthritis and I have had 5 chemotherapy treatments for it. I am still on 20 mg. of prednisone and 7.5 mg of Percocet a day for my pain and inflammation. I would like to get off of the two pills because I've been on them for about 3-1/2 years already. The Doctor doesn't seem to know what to do for me. I pray someone can help me. I just want to feel better again. I also have a caterack on my right eye that needs to be removed but the doctor is making me wait because they are afraid of infection. Please help me.
Have you contacted the helpline to see if Lynn or John can help vasculitis.org.uk/contact
Would like to take part, vasculitis is so debilitating and has psychological effects as well.
The "Have you ever .........." poll questions refer to the past tense. I am currently taking part in at least 2 research programmes, one initiated when I was still able to give blood and the other (years later) post diagnosis when asked by the hospital rheumatology team who look after me. Should the poll include, "Are you currently involved in ........."?
I've been on clinical research for Crohn's meds. One helped so much but the downside is when the research was done you didn't have the chance to carry on taking what helped and that was devastating
That must have been devastating, did you receive any feedback regarding the medication?
None whatsoever but I was asked to take part again but you can understand why I turned it down. To have something actually work and change your life is incredible, to then take it away was dreadful. We were told, prior to the study, if it helped we could get it for a further 6-9 months. This never happened and I was sent the obligatory thank you for participating letter.
The IBD nurse tried to rationalise it by saying it coukd have been placebo. Poppycock
Constraints have been - too tight response time, questions can't answer but the system won't let you 'miss' answering, so while questionnaire is ruined.
Tried to take part but declined as not yet in remission
I am taking part in the GENVAS research project and the UKIVas research project
An admin person on a remit using criteria without reason is blocking as when dod my MA Case studies were the most important not statistical questionable research .If you can't get diagnosis because of rationing the NHS has cause it is not fair to abandon.
Usually when I've checked out research they are either (1) not for my type, usually ANCA-associated only, or (2) they involve visits far too far away for me to travel. Yes I know V-UK is increasingly funding CNSV research, which is progress.
yes i would be interested in taking part for research, if it was to do with Large Vessel Vasculitis
I would love to take part in research and studies. I have a very rare condition and I want very much to contribute in anyway to the growing body of knowledge that would perhaps help people in the future to get better, faster diagnoses and better, more effective treatment.
However, I often do not qualify for one reason or another, European studies don't want US folks, too far away... I'm ANCA negative....etc.
Studies in the US often involve travel, which can be difficult sometimes. For being a big city, Atlanta, GA does not seem to be host of studies in this field, you often need to travel to west coast, Mayo Clinic in Rochester or Minnesota, far away from me.
If they just wanted history, questionnaires and regular blood tests, scans etc. I could do that.
But studies that involve treatment options, different medicines etc, are harder, because I do not want to interfere with the treatment plan that is in place through my healthcare team.
Also, my healthcare group here, Kaiser Permanente, does not seem to take part in research efforts with university groups etc. though this may be changing of late.
