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FANS MCN Steering Group meeting,
meeting
FANSSG1014
Greg Fearn
3 October 2014
Present:
Dr Anna Maria Choy
Greg Fearn
Dr Karen Smith
Dr Vicky Murday
Dr Iain Findlay
Dr Paul Broadhurst
Dr John Dean
Dr John Stout
Dr Rob Ainsworth
Dr Wayne Lam
Dr Kerry Anne Shearer
Consultant Cardiologist & FANS Lead Clinician, NHS Tayside
FANS Network Manager
Cardiology Nurse Consultant, NHS Tayside
Consultant Clinical Geneticist, NHS Greater Glasgow & Clyde
Consultant Cardiologist, NHS Greater Glasgow & Clyde
Consultant Cardiologist, NHS Grampian
Consultant Clinical
inical Geneticist, NHS Grampian
GP, NHS Grampian
Consultant Forensic Pathologist, NHS Lothian
Consultant Clinical Geneticist, NHS Lothian
Consultant Forensic Pathologist, NHS Lothian
Apologies:
Hazel Hailey
Bob McConnachie
Dr Ruth McGowan
Dr Catherine Labinjoh
Dr Derek Connelly
Prof Andrew Rankin
Dr Gillian Marshall
Denise Oxnard
Genetic Counsellor, NHS Grampian
FANS Public Representative, Cardiomyopathy Association
Consultant Clinical Geneticist, NHS Greater Glasgow & Clyde
Consultant Cardiologist, NHS Forth Valley
Consultant Cardiologist, NHS Greater Glasgow & Clyde
Professor of Cardiology, University of Glasgow
Consultant Cardiologist, NHS Greater Glasgow & Clyde
Genetic Counsellor, NHS Greater Glasgow & Clyde
Item
no.
1
Action
Welcome and Apologies
Dr Choy welcomed everyone to the meeting and apologies were noted as
above.
Dr Choy began the meeting by paying tribute to Professor Stewart Hillis who
sadly died in July. His tremendous contribution to cardiology, sports medicine
and FANS was acknowledged by the group.
2
Minutes of the Last Meeting – 11 June 2014
These were accepted as a correct record.
3
Matters Arising
Dr Choy stated that she had met with Prof Fleming from the Pathology
Patho
department in Tayside to discuss the pathology process in Dundee for sudden
cardiac death. Dr Ainsworth has also been in contact with Prof Fleming and will
continue to maintain contact with him to discuss
disc
developments.
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RA
4
Subgroup / Regional Updates
4.1 NMAHP
Dr Smith explained that there hadn’t been a subgroup meeting recently but that
she would be meeting with Greg in November to initiate new projects.
4.2 West of Scotland
There was a group discussion around several complex cases which had
recently come up at the MDT meeting. Agreement and consensus was reached
on each one and will be taken forward by the relevant clinicians.
4.3 East of Scotland
Dr Lam updated the group as to the latest developments in the East. There
were no major issues for discussion, but the MDT continues to progress
successfully.
4.4 Tayside
Dr Choy stated that the Tayside MDT meetings were continuing and that the
new joint clinics between cardiology and genetics with specialist nursing input
were established.
4.5 Grampian
There were no new issues brought to the meeting. The joint clinics continue.
4.6 Pathology
Firstly it was noted by Dr Ainsworth that the national contracting process for
pathology is now complete.
There was further discussion about the guidance regarding sudden infant
death. Dr Ainsworth stated that he understood the genetic sample is done
routinely but testing isn’t in Glasgow unless there is Procurator Fiscal and
family consent. A similar situation is in Edinburgh. In Aberdeen samples are
always extracted and stored. The Fiscal isn’t involved in the process. The
pathologist in Aberdeen makes the decision re testing.
5
The issue of paediatrics was then discussed. Tayside sudden death in children
are covered by the Glasgow service, as are patients in Forth Valley and Fife.
Lothian and Borders cases are managed in Edinburgh. Dr Choy and Dr
Ainsworth are to discuss the situation with regard to paediatric pathology. Greg
will contact Dr Karen McLeod in Glasgow to get her input.
AMC/RA
Protocols
The latest HCM guidelines are to be added to the website. Also the ARVC and
Long QT guidelines will be added.
GF / AG
6
Sudden Death Investigation Procedures
See 4.6 Pathology above
7
FANS Registry Update
Greg Fearn updated the group as to the latest developments re the national
FANS registry. He reported that there were now about 900 patients on the
registry, the majority of them HCM patients.
He also informed the group that himself and Dr Choy’s research assistant,
Fatima Baig, had been adding additional data to Tayside patients. He had
written a report on this which had been sent to the steering group prior to the
meeting. This illustrated the increasing potential of the registry to collate data
centrally on our patients. There was concern expressed that extending the
Registry to cover additional information would require an increasing amount of
double entry. But it was also stated by Dr Choy that not all regional systems
2
GF
could provide consistent information required for audit and research purposes.
However this is a legitimate concern though in Tayside work will continue to
add more complex patient information than the demographic and diagnostic
data which we currently have for all patients.
8
Audit Update
Unfortunately the video conferencing system finished early meaning there was
no opportunity for no opportunity to discuss audit.
9
Research Update (covered earlier in the meeting)
With regard to the Boston HCM study mentioned at the previous meeting Dr
Murday stated that they had stopped recruiting for this in December 2013.
Dr Choy stated that she would check on the research database to see if there
were similar trials looking at the use of Ace Inhibitors for the treatment of
genotype+ phenotype- patients with HCM. Dr Murday stated the study for the
treatment of pre-clinical HCM was referenced NCI 00319982. It may be
possible to add Scottish centres to the English centres from the Association of
Inherited Cardiac Conditions and apply for UK / European funding. Dr Choy
stated she would draft something for this. Dr Broadhurst offered to speak to
Professor Frenneaux in Aberdeen re this as well.
Dr Dean updated the group re the Heart Failure Society guidelines. It was
agreed that he would adapt the guideline to incorporate a comment on late
onset suspected HCM. Dr Murday stated the risk was minuscule if they have
no symptoms and are genotype negative. It was agreed that the work on this in
Glasgow should be extended to Aberdeen and Edinburgh centres. Dr Choy, Dr
Dean, Dr Lam & Dr Murday to discuss. It was also noted that Dr Murday would
add what screening is required.
The group discussed the RASE study and agreed to postpone joining it until Dr
Dean has attended the genetics meeting on whole gene sequencing.
10
AOCB
Unfortunately the video conferencing system finished early meaning there was
no opportunity for AOCB to be raised.
11
Date and Time of Next Meeting
The next meeting will be held on Wednesday 25 February 2015
3
AMC
AMC
PB
JD
AMC/JD/
VM/WL