This document summarizes a support meeting for patients with aspergillosis led by Graham Atherton and supported by staff from the National Aspergillosis Centre. The meeting included a talk on diagnosing Aspergillus by Marie Kirwan and discussed the Centre's research program and efforts to raise awareness and support for patients, including through local support groups, social media, and educational competitions for students.

1. Support Meeting for
Aspergillosis Patients
LED BY GRAHAM ATHERTON
SUPPORTED BY
MARIE KIRWAN GEORGINA POWELL, & DEBBIE KENNEDY
NAC CENTRE MANAGER CHRIS HARRIS
DIAGNOSING ASPERGILLUS: THE FUTURE AND THE WAY FORWARD BY MARIE B
KIRWAN
NATIONAL ASPERGILLOSIS CENTRE
UHSM
MANCHESTER
Fungal Research Trust

2. National Aspergillosis Centre
Research Programme
 Translational Research
 From Bedside to Bench
 Research for Patient Benefit
 Research Team
 Professor David Denning
 Professor Malcolm Richardson
 Specialist Nurses Marie, Georgina and Debbie
 Graham Atherton – Patient Support and Education Lead
 Chris Harris – NAC manager
 Phil Langridge - Physiotherpist
 Doctors – Clinic based, Laboratory Based
 Patients !!!

3. National Aspergillosis Centre
Research Programme
 WORLD MEDICAL ASSOCIATION DECLARATION OF HELSINKI
 Ethical Principles for Medical Research Involving Human Subjects
 Adopted by the 18th WMA General Assembly, Helsinki, Finland, June 1964, and amended
by the:
 29th WMA General Assembly, Tokyo, Japan, October 1975
 35th WMA General Assembly, Venice, Italy, October 1983
 41st WMA General Assembly, Hong Kong, September 1989
 48th WMA General Assembly, Somerset West, Republic of South Africa, October 1996
 52nd WMA General Assembly, Edinburgh, Scotland, October 2000
 53rd WMA General Assembly, Washington 2002 (Note of Clarification on paragraph 29 added)
 55th WMA General Assembly, Tokyo 2004 (Note of Clarification on Paragraph 30 added)
 59th WMA General Assembly, Seoul, October 2008

4. Ethical Principles
 International Conference on Harmonisation - Good Clinical
Practice (GCP)
 Compliance with this standard provides public assurance
that the rights, safety and well-being of trial subjects are
rights
protected.
 Consistent with the principles that have their origin in the
Declaration of Helsinki, and that the clinical trial data are
credible.
 GCP Certificate

5. Good Clinical Practice

6. Principles of ICH GCP
 13 Principles of ICH GCP –
 2.1 Clinical trials should be conducted in accordance with the ethical
principles that have their origin in the Declaration of Helsinki, and that are
Helsinki
consistent with GCP and the applicable regulatory requirement(s).
 2.3 The rights, safety, and well-being of the trial subjects are the most
important considerations and should prevail over interests of science and
society.
 2.8 Each individual involved in conducting a trial should be qualified by
education, training, and experience to perform his or her respective task(s).
 2.9 Freely given informed consent should be obtained from every subject
prior to clinical trial participation.

7. Clinical Research Process
 Idea
 Protocol
 Patient Information Sheet
 Patient Consent Form
 Sample Collection

8. Suspected Aspergillus Bronchitis
 Morning Sputum
 Bronchoscopy
 Second Sputum
 Young et al (1970) described eight patients with Aspergillus bronchitis - All
eight patients displayed respiratory symptomatology including breathlessness,
wheeze, cough and often mild haemoptysis yet interestingly, seven patients had
only scanty sputum production.

9. Bronchoscopy Study
 The primary objective of this study was to compare
the Aspergillus species diagnostic yield from
bronchoalveolar lavage (BAL), bronchial aspirate
and post bronchoscopy sputum samples by
quantitative detection using Real Time -
Polymerase Chain Reaction (RT-PCR) and
standard fungal culture.
 Is there a more accurate way and can WE do it
better?

10. Objective
 No prospective comparisons of laboratory methods for
culture of respiratory specimens for fungi have been
published.
 We conducted a 3 way comparison of standard culture,
higher volume culture and RT-PCR
 Aspergillus spp. on sputa and bronchoscopy specimens
 Five patients thought to have bronchial or pulmonary
aspergillosis.

11. Specimens
 All samples were divided into three even fractions.
 One was used for DNA extraction and RT-PCR
 One processed in accordance with BSOP57 for culture –
Clinical Sciences Laboratory
 One processed identically, except that the whole (1/3rd)
specimen was cultured – Mycology Laboratory.
Laboratory

12. Sputum Specimen Collections
 Morning Sputum


13. Bronchoscopy Specimens

14. Results
 Of the 25 specimens analysed from 5 patients, 1 (4%) was culture
positive (1 cfu) with the BSOP57 method, 9 (36%) by higher
volume culture (p = 0.01) and 23 (92%) by RT-PCR (p = 1.2x10-10
and p= 0.00007 respectively).
 Pre- and post-bronchoscopy samples (n=9) were always positive
by RT-PCR compared with 4 of 9 (44%) by higher volume culture
(p=0.02).
 RT-PCR signals on sputum samples were higher than BAL
samples. All 5 (100%) BAL samples were RT PCR positive
compared with higher volume culture (20%) (p=0.04).
 From multiple specimens, only 1 colony of A. fumigatus was
grown on high volume culture from 1 plate in 2 patients.

15. Results

16. Results

17. Conclusions
 Higher volume culture has a higher yield for Aspergillus
culture than current UK standard methodology.
 RT-PCR is much more sensitive than culture, and has a
wider dynamic range for quantitation.
 The current UK standard method requires revision and RT-
PCR should be implemented for patients suspected of
having aspergillosis.

18. Bronchoscopy Study

19. What are we looking for?
Klich MA. Identification of common Aspergillus species (2002). CBS.

20. Aspergillus fumigatus

21. Thank You
“The best chance we have of beating this illness is to
work together”
Living with it, Working with it, Treating it
Fungal Research Trust

22. Programme
 1pm Introduction
 1:05 Marie Kirwan Talks about…
 2:00 Tea & Coffee
 2:15 Future & feedback
 3:00 Close

23. Local Support Groups
 Local Support Groups – first one starting in
Liverpool
Local support
Local awareness (need to advertise locally)
Encourages proactivity
Information dissemination (leaflets etc.)
I could be available on PC to answer questions??
I have 6 possible groups starting up – London,
Southampton, Cornwall, West Midlands, USA &
Liverpool
Want these all over UK & the world if possible!

24. Local Patients Support Group
 Brenda Winslade & Lynn
 Took place 29th Feb in a Wetherspoons pub,
Liverpool
 Advertised through radio (BBC) & local media
 Local GP surgeries?
 Local respiratory nurse attended who has helped
with publicising through hospital email to
consultants

25. Local Patients Support Group
Achievements
 5 patients attended,
 one or two had never met anyone with aspergillosis
before
 Increased awareness in local community & media
 Increased awareness in local medical community
 Involvement of local staff
A GREAT SUCCESS!!!

26. Awareness
Underestimated and highly valuable
Increased awareness leads to :
 Better diagnosis & treatment as medics start to include aspergillosis as
a possible diagnosis (requires prevalence info)
 Better funding from private & government sources for diagnosis
treatment AND research (politicians take notice when lots of their
voters start talking about a health issue)
 Many health advantages (e.g. avoidance of damp buildings)
 Better coverage in media which leads to better awareness – the virtuous
circle

27. Student competitions
Aim: Building awareness amongst younger people & parents
 Art & music
 Original compositions
 £1200 prize (school & individual share)
 Theme is ‘funky fungi’
 Starting this month with mailshot to all schools in NW England, will
spread from there.
 www. projectlifecompetition.org

28. Facebook
 A massive marketing tool, therefore a massive help in
spreading awareness
 Nearly half the population of the UK has an account! More
in the US
 Older age groups are rapidly adding themselves (including
me)

29. Facebook – how does it help?
 Current technique – website = one person does a
search and finds us – linear increase in users

30. Facebook dynamics
 One user = multiple friends
 One person reached = many people reached
 Massively used so can reach many people
Users
Time

31. Facebook
 Starting to design for Facebook for patient meeting
support, Q & A
 Easy to do (but time consuming)
 Clearer set-out so you can find all of the parts in one place
 Yahoo group NOT changing

32. AOB
 Mobile phone numbers so I can text you about the meeting
 New leaflet - Photosensitivity
 Funguide Cook book – keep sending in recipes !

33. Thank You
“The best chance we have of beating this illness is to
work together”
Living with it, Working with it, Treating it
Fungal Research Trust