FLAIR Study Site List Map / UK CLL Expert Centres

[AdrianUK]

I have received from the organisers of the UK FLAIR trial an updated list of hospitals and doctors running the FLAIR trial, which you can find below or by viewing the following google map where you can easily find your closest site:

google.com/maps/d/viewer?mi...

This list is of great interest for two reasons for UK patients.

1. The FLAIR trial is a very attractive option to consider for patients who need their first treatment, and who would otherwise be prescribed FCR on the NHS.

Members of the CLL Health Unlocked group will be able to see many previous posts about the FLAIR trial (some of which you can see by clicking on my name or the related posts to the right).

A simple outline of the FLAIR study is available at the following link (but note that the Ibrutinib plus rituxamab arm because it opened first has now closed as they have already recruited enough patients) cancerresearchuk.org/about-...

Below there is a list of sites including the main investigator's name and address. If you are interested in potentially entering the study or even just a second opinion you can ask your GP or local haematologist to refer you for a second opinion and consideration of enrolment in the trial.

If either you or your local doctor are beginning to think it may be time to consider treatment the initial FLAIR assessment is a thorough and systematic way to determine whether or not treatment is definitely indicated. It is likely to be a great way to help you better understand the reasons to treat or not treat, even if at the end you decide you don't want to enter the study. The iwCLL guidelines for treatment remain somewhat ambiguous and can therefore be open to different interpretations by different experts (see bloodjournal.org/content/13... )

2. This list goes some way towards identifying a list of CLL experts in the UK. So, even if you are not interested in or suitable for FLAIR (e.g. because you have already received treatment) this list may help you as you weigh your options for a second opinion referral.

There is clear data that being treated by a CLL expert prolongs life in patients with CLL.

See ncbi.nlm.nih.gov/pmc/articl... and onlinelibrary.wiley.com/doi...

This was a strong effect and was still there when a patient was being seen by a doctor who was not themselves a CLL expert but was supervised by someone who was. So in a UK context being seen at a centre where a CLL expert supervises your care even if you never meet him or her may make you live longer. This is at least in part because experts in CLL tend to treat later in general, but also are perhaps a bit clearer about the signs of when it is important to treat. They will in some cases leave someone untreated who has a very high lymphocyte count, but in other cases will treat when they feel they need to when someone has a much lower count (e.g. if it is rising quickly and there are other symptoms).

Even if your local haematologist is reluctant to refer you for a second opinion most GPs will happily do this, and if they won't well, you can always change your GP till you find someone who will!

There are different levels of expert and you should decide for yourself what level you are happy being treated by. You may decide to stay at a lower level until it looks likely you need treatment soon, and even then may decide simply to get an opinion but actually receive treatment locally.

A. All Consultant Haematologists will undergo some training in blood cancers as part of their specialist training but as there are over 130 different blood cancers some local specialists may not be as interested in CLL as they are in other cancers, or even other aspects of haematology.

B. A haematologist who self declares they have a special interest in CLL and makes an effort to stay up to date (e.g. by being part of the CLL Forum ukcllforum.org and/or international conferences)

C. A CLL specialist who runs clinical trials in CLL. (clearly all FLAIR sites meet at least this criteria).

D. A CLL expert who publishes clinical papers in the literature about CLL.

E. A top international clinical expert in CLL recognised because of their extensive publications, professor status, and speaking at international conferences.

When you are considering which hospital you would like to receive treatment at whether or not you want to be in the FLAIR study, consider the following:

1. Do they run clinical trials in CLL? It is reasonable to assume that every CLL expert site will be running FLAIR unless they have a very good reason not to (ask them why if they aren't). Even if you never want to be in a clinical trial, open sites have proved to someone else that they have some level of expertise in CLL and are capable of running a trial.

2. How many doctors treat CLL at this hospital? and How many patients with CLL are seen here? The more the better, though it is sometimes possible to lose the personal touch a little in some of the huge centres. Top tip here, is just like with your GP you can usually ask the clinic if it is possible to see the doctor you prefer to see (especially if there is a key decision point looming) either on the day via reception or before hand via the consultant secretary.

3. How are the services organised? (try searching NHS Choices for reviews and ratings of the hospital you are considering and reviewing their website). An example of a great website from an expert centre is UCLH in London (linked below), which also includes a 24/7 telephone number for all their CLL patients to call if they need medical advice. Check out what is happening at the hospital you are considering: Example website: uclh.nhs.uk/OurServices/Ser...

If you ever need an inpatient admission (e.g. for an infection) does the hospital you are considering have dedicated haematology beds and an on-call haematology / lymphoma registrar service? (just slightly more junior than consultant).

3. Is there a true CLL expert supervising the hospital team, and how much have they published? Search PubMed to see what your closest expert has published in the literature about CLL. See this link for the example of Peter Hillmen from Leeds who is very prolific! ncbi.nlm.nih.gov/pubmed?ter...

NB when you are considering the following list, please understand that the principle investigator (PI) at a site may not be the most expert member of the team. So for example at UCLH Prof Nathwani leads the CLL team but a different doctors is the PI.

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FLAIR SITES (listed in alphabetical order by name of hospital)

See also this google map: google.com/maps/d/viewer?mi...

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DrGavinPreston: Aberdeen Royal Infirmary

Aberdeen Royal Infirmary

Foresterhill Road

Aberdeen

AB25 2ZN

DrGeorge Follows: Addenbrooke's Hospital

Addenbrookes Hospital

Hills Road

Cambridge

CB2 0QQ

DrPatrickElder: Altnagelvin HospitalAltnagelvin Hospital,

WHSCT,

Glenshane Road,

Glenshane,

Londonderry BT47 6SB

DrSudhakaranMakkuni: Basildon Hospital

Basildon University Hospital

Nethermayne

Basildon

Essex

SS16 5NL

DrSylwiaSimpson: Basingstoke and North Hampshire Hospital - Hampshire Hospitals NHS Foundation Trust

Royal Hampshire County HospitalBasingstoke and North Hampshire Hospital

Aldermaston Road

Basingstoke

RG24 9NA

DrAlisonMcCaig: Beatson Oncology Centre

Royal Alexandra Hospital

Victoria Hospital GlasgowRoyal Alexandra Hospital

Corsebar Road

Paisley

Scotland

PA2 9PN

DrOonaghSheehy: Belfast City HospitalBelfast City Hospital

Belfast Health and Social Care Trust

51 Lisburn Road

Belfast

BT9 7AB

DrShankara Paneesha: Birmingham Heartlands Hospital

Good Hope HospitalBirmingham Heartlands Hospital

Birmingham

B9 5SS

DrMarianMacheta: Blackpool Victoria HospitalBlackpool Victoria Hospital

Whinney Heys Road

Blackpool

Lancashire

FY3 8NR

DrSrinivasa RaoDasari: Borders General HospitalBorders General Hospital

Newstead

Melrose

TD6 9BS

DrAdrian Willams: Bradford Royal InfirmaryBradford Teaching Hospitals NHS Foundation Trust

Duckworth Lane

West Yorkshire

BD9 6RJ

DrRachelProtheroe: Bristol Haematology & Oncology CentreBristol Haematology and Oncology Centre

Horfield Road

Bristol

BS2 8ED

DrKateRothwell: Calderdale Royal Hospital

Huddersfield Royal InfirmaryCalderdale Royal Hospital, Salterhebble, Halifax, HX3 0PW

Huddersfield Royal Infirmary, Acre Street, Lindley, Huddersfield, HD3 3EA

DrDavidAllsup: Castle Hill HospitalCastle Hill Hospital

Castle Road

Cottingham

HU16 5JQ

Dr RebeccaFrewin: Cheltenham General Hospital

Gloucestershire Royal HospitalGloucestershire Royal Hospital

Great Western Road

Gloucester

GL1 3NN

DrAdrianBloor: Christie HospitalChristie NHS Foundation Trust

Wilmslow Road

Manchester

M20 4BX

DrAnnaSchuh: Churchill HospitalOxford Cancer Centre & Cancer Research UK

Oxford University Hospitals NHS Trust

DrMichaelHamblin: Colchester General Hospital

Colchester General Hospital

Turner Road

Colchester

Essex

CO4 5JL

DrSalaheddinTueger: Countess of Chester Hospital

Countess of Chester Hospital, Chester, CH2 1UL

DrKathrynBoyd: Craigavon Area Hospital

Craigavon Area Hospital

68 Lurgan Road

Portadown

BT63 5QQ

DrBettyCheung: Croydon University Hospital

Croydon University Hospital

530 London Road

CR7 7YE

DrClaireHutchinson: Derriford HospitalDerriford Hospital, Derriford, Plymouth, PL6 8DH

DrJoeJoseph: Doncaster Royal Infirmary

Doncaster Royal Infirmary

Armthorpe Road

Doncaster

DN2 5LT

Dr PawelKaczmarek: East Surrey Hospital

East Surrey Hospital

Canada Avenue

Redhill

Surrey

RH1 5RH

DrCorinneDe Lord: Epsom General Hospital

St Helier HospitalSt Helier Hospital

Wrythe Lane

Carshalton

SM5 1AA

DrJhansi Muddana: George Eliot HospitalGeorge Eliot Hospital

College Street

Nuneaton

CV10 7DJ

DrEarnestHeartin: Glan Clwyd Hospital

Glan Clwyd Hospital

Bodelwyddan

Rhyl

LL18 5UJ

DrGamalSidra: Lincoln County Hospital, Grantham & District Hospital

Pilgrim HospitalHaematology Department

Lincoln County Hospital

Greetwell Road

Lincoln

Lincolnshire (E Mid)

LN2 5QY

DrClaireHall: Harrogate District HospitalHarrogate District Hospital

Lancaster Park Road

Harrogate

HG2 7SX

DrIsobelChalmers: Ipswich Hospital

Ipswich Hospital NHS Trust

Heath Road

Ipswich

Suffolk

IP4 5PD

DrRajeshMamadigi: James Cook University Hospital (South Tees)

James Cook University Hospital

Marton Road

Middlesbrough

TS4 3BW

DrShalalSadullah: James Paget Hospital

James Paget Hospital,

Great Yarmouth,

NR31 6LA

DrPiersPatten: Kings College Hospital

Princess Royal University Hospital

Kings College Hospital

Denmark Hill

London

SE5 9RS

DrSteveJones: King's Mill Hospital

Kings Mill Hospital

Mansfield Road

Sutton-In-Ashfield

Nottinghamshire

NG17 4JL

DrBenKennedy: Leicester Royal Infirmary

Leicester General Infirmary

Gwendolen Road

Leicester

LE5 4PW

DrSarahBurns: Manchester Royal Infirmary

Manchester Royal Infirmary

Oxford Road

Manchester

M13 9WL

DrMoezDungarwalla: Milton Keynes General Hospital

Milton Keynes Hospital

Standing Way

Eaglestone

Milton Keynes

MK6 5LD

DrLindsayMitchell: Monklands Hospital

Monklands Hospital

Monkscourt Avenue

Airdrie

Scotland

ML6 0JS

DrBelindaAusten: Musgrove Park Hospital

Musgrove Park Hospital

Taunton

Somerset

TA1 5DA

DrNilimaParry-Jones: Nevill Hall Hospital

Nevill Hall Hospital

Brecon Road

Abergavenny

NP7 7EG

DrSajjanMittal: Northampton General Hospital

Northampton General Hospital

Cliftonville

Northampton

NN1 5BD

DrChristopherFox: Nottingham City Hospital

Nottingham University Hospitals

City Hospital Campus

Hucknall Road

Nottingham

NG5 1PB

DrMSivakumaran: Peterborough City Hospital

Peterborough City Hospital

Peterborough & Stamford NHS FT

Bretton Gate

PE3 9GZ

Dr Ram Jayaprakash: Poole Hospital

Poole Hospital NHS Foundation Trust

Longfleet Road

Poole

Dorset

BH15 2JB

DrEdwardBelsham: Queen Alexandra Hospital

Royal Bournemouth Hospital

Castle Lane East

Bournemouth

BH7 7DW

DrGuyPratt: Queen Elizabeth Hospital BirminghamUniversity Hospital

Birmingham NHS Foundation Trust

Queen Elizabeth Hospital

Queen Elizabeth Medical Centre

Edgbaston

Birmingham

B15 2TH

DrScottMarshall: Queen Elizabeth Hospital Gateshead

Queen Elizabeth Hospital (Gateshead)

Sheriff Hill

Gateshead

NE9 6SX

DrPaulGreaves: Queen's Hospital RomfordHaematology & Oncology Department

Queens Hospital

Rom Valley Way

Romford

Essex

RM7 0AG

DrCarolineDuncanRaigmore: HospitalRaigmore Hospital

Department of Haematology

Old Perth Road

Inverness

IV2 3UJ

DrRichardWent: Rotherham District General Hospital

Rotherham District General Hospital

Moorgate Road

Oakwood

Rotherham

S60 2UD

DrRenataWalewska: Royal Bournemouth General Hospital

Royal Bournemouth Hospital

Castle Lane East

Bournemouth

BH7 7DW

DrJulie Blundell: Royal Cornwall Hospital (Treliske)

Royal Cornwall Hospital

Truro

Cornwall

TR1 3LJ

DrJoAddada: Royal Derby Hospital

Royal Derby Hospital

Uttoxeter Road

Derby

DE22 3NE

DrAnthony Todd: Royal Devon & Exeter Hospital

Royal Devon and Exeter Hospital

Barrack Road

Exeter

Devon

EX2 5DW

DrHelenJackson: Royal Gwent HospitalBlock 3, Pathology

Royal Gwent Hospital

Newport

Gwent

NP20 2UB

DrNickMorley: Royal Hallamshire Hospital

Royal Hallamshire Hospital

Glossop Road

Sheffield

S10 2JF

DrDavidHowarth: Royal Lancaster Infirmary

Royal Lancaster Infirmary,

Ashton Road, Lancaster,

LA1 4RP

ProfessorAndrewPettitt: Royal Liverpool Hospital

Royal Liverpool University Hospital

Prescot Street

Liverpool

L7 8XP

DrSunilIyengar: Royal Marsden Hospital

Royal Marsden,

Fulham Road,

London, SW3 6JJ

DrAntoninaZhelyazkova: Royal Oldham Hospital

Royal Oldham Hospital

Central Admin, Pennine Square

Rochdale Road

Oldham

OL1 2JH

DrNeilPhillips: Royal Stoke University Hospital

Royal Stoke University Hospital, Newcastle Road, Stoke-on-Trent, ST4 6QG

DrJohannes de Vos: Royal Surrey County Hospital

Royal Surrey County Hospital

Egerton Road

Guildford

GU2 7XX

DrChristopherKnechtli: Royal United HospitalRoyal United Hospital,

Combe Park,

Bath, BA1 3NG

MrJeffNeilson :Russells Hall Hospital

Russells Hall Hospital

Georgina Unit

High Street

Pensnett

Dudley

DY1 2HQ

DrSonyaRavenscroft: Salford Royal Hospital

Salford Royal Hospital NHS Foundation Trust

Stott Lane

Salford

Manchester

M6 8HD

DrJonathanCullis: Salisbury District Hospital

Salisbury District Hospital

Salisbury

SB2 8BJ

DrYasminHasan: Sandwell Hospital

Sandwell General Hospital

Lyndon

West Bromwich

West Midlands

B71 4HJ

DrSanjeevJalihal: Scunthorpe General Hospital

Diana, Princess of Wales HospitalScunthorpe General Hospital

Cliff Gardens

Scunthorpe

DN15 7BH

DrUnmeshMohite: Singleton Hospital

Singleton Hospital

Sketty Lane

Swansea

SA2 8QA

DrFrancesco Forconi: Southampton General Hospital

Southampton General Hospital

Tremona Road

Southampton

SO16 6YD

Professor JohnGribben: St Bartholomew's Hospital

St Bartholomew's Hospital

West Smithfield

London

EC1A 7BE

ProfPeter Hillmen: St. James's University Hospital,

LeedsDepartment of Haematology, Level 3 Bexley Wing

St. James's University Hospital

Beckett Street

Leeds

LS9 7TF

DrFenellaWillis: St George's Hospital

St George's Hospital,

London, SW17 0QT

DrHelenEagleton: Stoke Mandeville HospitalCCHU

Stoke Mandeville Hospital

Mandeville Road

Aylesbury

Buckinghamshire

HP21 8AL

Dr DeborahTurner: Torbay District General Hospital

Torbay District General Hospital

Lawes Bridge

Torquay

South Devon

TQ2 7AA

DrKateCwynarksi: University College London

University College London Hospital

235 Euston Road

London

NW1 2BU

DrVikramSingh: University Hospital Aintree

University Hospital Aintree

Lower Lane

Liverpool

L9 7AL

Dr ChristopherFegan: University Hospital of Wales, Cardiff

University Hospital of Wales

Heath Park

Cardiff

CF14 4XW

DrSarahNicolle: University Hospitals Coventry & Warwick

University Hospital Coventry

Clifford Bridge Road

Coventry

CV2 2DX

DrKerriDavidson: Victoria Hospital Kirkcaldy

Queen Margaret HospitalFife Area Labs

Victoria Hospital (Kirkcaldy)

Hayfield Road

Kirkcaldy

Fife

KY2 5AH

DrHassenAl-Sader: Watford General Hospital

Watford General Hospital,

Watford,

WD18 0HB

DrAnastasiaChew: West Middlesex University Hospital

West Middlesex University Hospital,

Isleworth, TW7 6AF

DrSaranNicholas: West Wales General Hospital (Glangwili)

Glangwili General Hospital, Chemotherapy Day Unit, Dolgwili Road, Carmarthen, SA31 2AF

Glangwili General Hospital

Dolgwilli Road

Carmarthen

Carmarthenshire

SA31 2AF

DrFionaScott: Western General Hospital

Western General Hospital

Crewe Road

Edinburgh

EH4 2XU

DrNicholasPemberton: Worcestershire Acute Hospitals NHS Trust

Worcestershire Royal Hospital

Charles Hastings Way

Worcester

WR5 1DD

DrSantoshNarat: Worthing Hospital

St Richards Hospital (Chichester)Worthing Hospital

Lyndhurst Road

Worthing

BN11 2DH

DrSimonWatt: Wythenshawe HospitalDepartment of Haematology

University Hospital of South Manchester NHS Foundation Trust

Southmoor Road

Wythenshawe

Manchester

M23 9LT

DrAnnikaWhittle: York HospitalYork Hospital

Wiggington Road

York

YO31 8HE

Dr JimSealeYsbyty: GwyneddYsbyty Gwynedd

Penrhosgarnedd

Bangor

LL57 1PW

DrDavidWatson: Ysbyty MaelorWrexham Maelor Hospital

Croesnewydd Road

Wrexham

LL13 7TD

This is an UNLOCKED post so all comments may appear on Google. I suggest you do not share personal medical information in the comments section below.

If you would like to review your own centre this post is also NOT the place to do so, please consider writing a review and rating on the NHS Choices Website instead. nhs.uk/pages/home.aspx

[RitaBa]

Adrian, that is an impressive report!

Many thanks for all the time , research and efforts you put into these CLL posts. 👍🏼

I always read your posts with great interest.

[AdrianUK in reply to RitaBa]

Thanks Rita. I just kept asking the flair organizers till they sent it to me.

[CraftyMeg]

A very useful article - thanks Adrian. I'm so glad my specialist is on this list!

[Tingy]

Hi Adrian,

You’ve obviously been very busy working hard to compile this list. I’m relieved that my specialist is on the list but concerned that my old hospital is on the list where there is still no CLL specialist so I’d advise people to check out for themselves carefully before asking their GP to refer them to a specific hospital.

[AdrianUK in reply to Tingy]

For sure this list is just a starting point. I would look at the closest flair site do some desk research about them and then if that looks less promising go for one that’s a little further away. Honestly if we could all be under Peter Hillmen in Leeds, the guy in Cardiff, or one of the top London docs at UCLh Bart’s or the Marsden we’d probably be better off but people on here keep telling me it’s not reasonable. And traveling for a one off second opinion is more reasonable than ditching the local one altogether. It would be interesting for you to look up the person who is PI at the hospital you think isn’t a CLL expert as perhaps they are a new appointee. There’s no question not all of these sites are “top tier” but they have to be better than some of the Haematolgists out there who just aren’t interested in CLL at all. Personally I would love us to grade these sites in a scientific manner by looking at which hospitals have a cll expert who have published there and maybe by collecting ratings (perhaps via NHS choices). Not something I could do on my own whereas nagging the FLAIR team for this list was something I could do and I’d forgotten how easy it is to create a google map!

[Tingy in reply to AdrianUK]

I have already looked upresearched the consultants at my old hospital including the one listed on your list and there is no CLL specialist there. I did this before replying to your post.

I just wanted people to fully research for themselves before undergoing any treatment offered.

I’m now under one of the leading consultants who leads research into CLL in the uk and have been for almost two years now.

[Newdawn Administrator in reply to AdrianUK]

As you’re aware Adrian, I have very personal reasons to be interested in this just now because decisions may be looming so thanks for compiling the list.

I like my haematologist at the local hospital but it’s a badly resourced unit with no supportive infrastructure or actual haematology Ward which concerns me for treatment.

The next available hospital to me doing the Flair trial is headed up by a haematologist I can find absolutely nothing on and have never heard of. This doctor hasn’t published, taught or been active in previous trials that I can find (unlike my Dermatologist at the same hospital). That doesn’t mean this medic isn’t highly competent but the title CLL ‘expert’ couldn’t be attributed.

However, this Unit is better equipped in terms of supportive infrastructure and an actual Ward!

Whilst we’d all love to be treated at somewhere like Leeds, it’s just not possible or practical because the service there would be totally overwhelmed.

If I opt to apply for the trial, I have to hope the clinical oversight is exceptional because the unit doesn’t have the reputation of being top league.

Newdawn

[AdrianUK in reply to Newdawn]

hi. I would visit with the PI for flair at that hospital and ask him where he goes for advice and what he feels about second opinions. It could well be that what you have there is a forward thinking Haem with some interest in CLL and who respects Peter Hillmen enough to want to be in his trial. Remember the life extending effects of cll experts extended to doctors they called “fellows” who were supervised by them. So if your second opinion at Leeds Confirms it’s time to treat then especially if you are going into flair where everything is tightly regulated you should do fine. I go to a real cll expert who has published and everything but as you know when it came to a crunch decision point “time to treat” or not I wanted not just one but two second opinions. I am convinced that what you need is a doctor who will take advice from experts and who won’t rush to do his own thing and either treat too soon or too late.

Also if they have a ward that is a GOOD THING. A third of all patients treated with FCR end up as impatients at least once during treatment apparently.

[G1llHa1n]

Like Tingy, I was well pleased to find 'my' consultant is the one listed in charge of the Flair trial locally. I still hope never to need treatment but it is reassuring - just in case.

[HAIRBEAR_UK Founder Admin]

Adrian good that locations participating in FLAIR has been updated recently. Thanks for adjusting your post title to expert sites.

As you state; " There are different levels of expert and you should decide for yourself what level you are happy being treated by. You may decide to stay at a lower level until it looks likely you need treatment soon,"

We look forward to feedback when you have applied your measures 1-3 that may confirm level of expertise all these trial investigators have? there are a core group with considerably more experience than others.

It would be interesting to know who has a special interest in CLL? How many CLL patients they treat? How many papers they have published about CLL?, How many patients are enrolled on the Flair trial at their location? Are they members of CLL academic groups and committees that define treatment guidelines etc??

Many thanks

Nick

[AdrianUK in reply to HAIRBEAR_UK]

Hi Nick, I don’t have the time or energy to do that on my own. When I looked at my own site UCL I note that there’s an issue because the top expert there is not listed as the PI of this study. So if we rated UCLH based on how many cll publications the PI had done it would be down graded. This may be true elsewhere too.

Personally if the community was interested in ranking these sites unless anyone is aware of a true expert site that has passed on FLAIR for a good reason then we could start by saying all CLL expert sites are found within this list but their level of expertise varies.

Someone would have to check each site to answer the following simple questions which we could easily note without being criticized as they are simple statements of fact.

1. Has any of the consultants at the site published in CLL? (This to me would put them up a notch and someone with time could do this by using pubmed and searching for the name of each PI then for any hospitals that Haven’t got publications checking the website of that hospital to confirm if there’s actually an expert there we don’t know about. I did separately start looking for authors in the uk on key cll publications

2. Then we could ask the hospital sites to fill in a simple questionnaire asking how many patients they have with cll on their books as the more a hospital sees the more expert they probably are.

3. If we wanted to be really clever we could also ask which hospitals have dedicated Haem beds that can be used for admissions, dedicated on call Haem or lymphoma registrars, and a 24/7 helpline number for all cll patients.

We could do all that without ranking them in any subjective way.

The presence on committees etc would be interesting but becomes more complicated.

As I say often these days I have lots of ideas but not much energy to implement them.

Maybe this is something one of the charities might light to take forward more.

[HAIRBEAR_UK Founder Admin]

Thanks Adrian yes, I think you are correct being listed as a principle investigator does not necessarily imply individual expertise and I do agree with you that: CLL expert sites are found within this list but their level of expertise varies.

The way you mapped out the reach of the trial on google does emphasise how many can access it perhaps we can work with the clinical community to apply CLL trial activity as a whole for there are other trials, but never at all of these locations. Access to latest technologies and clinical trial is very important, it may not always imply level of expertise but to my mind a clinical trial does imply level of thoroughness in the application of the medicine and care. because of strict trial protocol.

Nick

[AdrianUK in reply to HAIRBEAR_UK]

Exactly. And even more so in the case of FLAIR where its a relatively simple trial of very promising new approaches I would be concerned about a site claiming to be expert that didn’t want to run FLAIR unless they had a very good local reason. If there was the appetite in CLLSA or LC we could as a community grade sites and determine which ones WE think should be seen as expert sites which I have seen work well in other disease areas.

[G1llHa1n]

Very much agree that this would be a very beneficial piece of research to do. The idea of one of the charities taking it on is good - if they could staff/ fund it. As a patient I would be concerned that I, as a private individual, would not have sufficient knowledge to be asking the right questions. Interest and possible future need don't qualify one - it's not one of my areas of expertise and I'd be concerned that I'd miss or not recognise important factors.