10h40 m. mayer - international cteph association · pea activities 2014 (personal and ica estimate)...

PEA: Global perspec0ve, ICA mission

Eckhard Mayer, Bad Nauheim, Germany

Why is PEA surgery so important for CTEPH patients?

Cum

ulat

ive

Surv

ival

0.00

0.20

0.40

0.60

0.80

1.00

Months from Diagnosis

0 6 12 18 24 30 36 42 48 54 60 66

404275

382246

374228

366214

361200

355188

336164

244120

158 58

62 20

3 2

0 0

patients at risk at the end of the time period

p=<0.0001 (log-rank test)

Figure 1a : Time to death from date of diagnosis- Kaplan-Meier survival estimates -

- All patients enrolled, N = 679 -

Operated, N=404Non-operated, N=275

Simonneau G, et al. Am J Respir Crit Care Med 2013; 187:A5365.

PEA 1989

PEA Programmes 1989 - 1995

Export of a complex medical and surgical concept from UC San Diego to Europe (K. Moser, P. Daily, S. Jamieson)

PEA Snowball Effect 1995 - 2014

1989 1995 2005

2014

PEA Activities 2014 (Personal and ICA Estimate)

2-3 PEA/million 1-2 PEA/million <1 PEA/million no PEA

Problems encountered in countries with low PEA frequency

Curative treatment option for fatal disease no access to healthcare system or CTEPH expert center inadequate awareness of CTEPH no or delayed diagnosis of CTEPH no PEA center in the region or country lack of experience in low volume PEA centers

Interdisciplinary CTEPH Team physicians experienced in PH and CTEPH (pulmonologist/cardiologist) expert radiologists cardiothoracic surgeons with technical expertise and experience multidisciplinary team for operative and postoperative management (anaesthesiologists, perfusionists, ECMO team, intensive care physicians, nurses and respiratory therapists) long learning curve for all disciplines!

Key issues in countries with higher PEA frequency increased awareness, increasing number of patients risk of medical/interventional treatment for operable CTEPH patients subjective evaluation of operability, no preop. risk score PEA surgical training is difficult, learning curve lack of experience in low volume PEA centers (no healthcare regulations in many countries) increased need for PEA surgery. Will number of expert PEA centers be sufficient?

Increased need of PEA surgery Paris=France PEA 1995 – 2012

(n = 1138)

Courtesy of Prof. Philippe Dartevelle

6 4 14 22

34 38 43 40

66 56 60

81 84

128 140

154

0

20

40

60

80

100

120

140

160

1997 1998 1999 2000 2001 2002 2003 2004 2005 2006 2007 2008 2009 2010 2011 2012

Ac#v

ity

Year

Papworth Hospital PEA Ac#vity 1997-‐2012)

Papworth (UK) activity

Internal audit data Papworth hospital 2013

1.  Increase awareness of Chronic Thromboembolic Pulmonary Hypertension (CTEPH)

2.  Foster worldwide collaboration among CTEPH Centers

3.  Serve as platform for surgical centers

4.  Facilitate training of emerging CTEPH centers

5.  Advance research and improve education in CTEPH

ICA Objectives (and Mission)

ICA Objectives

180 participants

The meeting has been organized by the Association for Research in CTEPH, in close collaboration with Papworth Hospital, a University of Cambridge Teaching Hospital

280 participants

450 par0cipants

2. Foster worldwide collaboration among CTEPH Centers 3. Serve as platform for surgical centers 4. Facilitate training of emerging CTEPH centers

CTEPH Platform

ICA Objectives

CTEPH Imaging Platform – International CTEPH Association (ICA)

CTEPH Platform

• Web-based platform which will allow for •  upload of medical images (CT scans, Pulmonary

Angiography, V/Q scintigrams, MRI) and documents in a secure environment

•  provide access to these images for registered/invited users

•  Review of uploaded images

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Objectives

•  Main objectives of the CTEPH platform are: •  Obtain expert opinion •  Obtain second opinion •  Support and training of emerging sites •  Networking among CTEPH specialists (physicians,

surgeons, radiologists, anaesthesiologists)

•  Note: Use of platform will be restricted to CTEPH

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Scenarios

•  Clinical Case: •  A site will upload images for a given patient (or

several patients), whose case(s) should be discussed with other expert site(s), e.g. for second opinion. Images will be deleted from server after review session.

•  Teaching Case: •  Medical imagery of patients, whose case if of

particular interest for teaching purpose, will be uploaded and accessible for other registered sites. Will typically remain on server.

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Security & Data Confidentiality

•  Medical imagery / patient data •  Will be secure from un-authorized access •  Correlation with a particular patient or treating

physician / hospital will not be possible

Therefore:

•  Data will be encrypted for transport over the Internet and storage on the server

•  Medical imagery will be rendered anonymous (no patient / hospital names or initials)

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Connect from your favourite web browser -‐ PC or MAC

Open to members of the ICA. Join the ICA today to register interest.

View training cases Upload cases for consultaCon Share cases with colleagues worldwide


View CT, MR, Nuclear Medicine, CR/DR, Ultrasound and more… Interact with colleagues Transfer control between parCcipants


CTEPH Platform

Start: Q 3, 2014

New CTEPH Database – May 2014

New International CTEPH Database"


Data Base - Objectives

•  Describe epidemiology of CTEPH, mode of diagnosis and treatment worldwide

•  Determine long-term outcome as measured by NYHA FC and survival •  In all patients •  In different treatment groups

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Participating Sites - Timelines

•  CTEPH sites worldwide are invited to participate

•  Roll-out to first sites: second half 2014

•  Inclusion period: up to # 800 patients included or Q1 2017 (whatever is reached earlier)

•  Follow-up: Minimum of 3 years follow-up / patient

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Patient population

•  Patients diagnosed with CTEPH can be included into the database within 1 year after confirmatory RHC (incident patients)

•  Criteria for inclusion •  Treated with anti-coagulation at least 3 months

before diagnosis •  Mean PAP >= 25 mmHg •  Abnormal VQ scan, pulmonary angiogram

confirming diagnosis

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Data collected

•  Demographics •  Diagnostic work-up including HD data •  NYHA functional class (diagnosis and follow-up) •  Medical treatment at diagnosis and follow-up •  PEA procedures •  BPA procedures •  Outcomes

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Access to CTEPH Data Base and Platform

•  ICA member •  Membership is free •  Until June 3rd, 2014 •  Later applications: € 2500 per year •  Hurry up now! •  Joke!

•  www.cteph-association.org •  [email protected]

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PEA Perspectives 2025

For political, geographical, economical, social and religious reasons, this slide is an illusion

and eventually the number of experienced PEA surgeons will not be sufficient.

10h40 m. mayer - international cteph association · pea activities 2014 (personal and ica estimate)...

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