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National Clinical Melanoma Database
Innovation and Advancement In Melanoma Research Through Data Analysis
Dr. Scott Ernst
THANK YOU
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Objective
To develop a national network of Cancer Centres involved in themanagement of melanoma and specifically to procure a national
clinical database.
THE PLAN
Goals of Patient Registries
Track natural history of a disease process
Measure/Monitor safety and harm
Evaluate clinical, comparative or cost effectiveness
Measure and/or improve quality of care
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Data Collection
Analytics
Real‐time on‐demand frequencies on patients
Filtering options to be set on disease stage, drug, complications, and virtually any field within the subject record
Customizable graphing and plotting interfaces
Data Mining
• Heavier analytics can be applied to extracted datasets since each field is independently collected, validated and stored on the platform.
• For example, we’ve mined datasets using Markov models, data clustering and decision tree’s
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THE PRESENT
Progress
11
2010
• Prototype developed
2011• Modified
• Populated London, ON
2012/13• Implement
• Expand across Canada
superficial spreading
57%lentigo maligna
6%
nodular27%
acral lentiginous
1%
desmoplastic1%
neurotropic0%
other8%
Histological Class
44%56%
Metastatic Status metastatic non‐metastatic
87%
13%
Resectability Status
resectable unresectable
Disease Statuses
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5
0
10
20
30
40
50
60
70
80
90
0
Unkn
…
IA IB IIA
IIB
IIC
IIIA
IIIB
IIIC
IV(M
1A)
IV(M
1B)
IV(M
1C)
Ocu
lar
PUK
Absent
Present
Number of Patients BRAF
Mutation
Proportion of patients with presence versus absence of BRAF mutation in unresectable metastic patient across disease stages
BRAF Mutation
Melanoma Patients with Brain Metastases
0
5
10
15
20
25
30
35
40
45
50
IIIA IIIB IIIC IV (M1A) IV (M1B) IV (M1C)
Presentation stage
present
absent
Numberof Patients
Proportion of Melanoma patients with brain metastases at presentation across stages III and IV
Brain Metastases
0
10
20
30
40
50
IIIA IIIB IIIC IV (M1A) IV (M1B) IV (M1C)
Presentation stage
present
absent
Number of Patients
Proportion of multiple melanoma patients who develop brain metastases subsequently across
stages III and IV
Brain Metastases
Recurrence Recurrence ~ 39.9% (172 cases)
Site of Recurrence
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Head25.6%
5 yrs Survival by Primary Site
17
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Centres currently participating• London Regional Cancer Centre
• Sunnybrook‐ Toronto
• Princess Margaret‐Toronto
• Cross Cancer Institute‐ Edmonton
• Tom Baker Institute‐ Calgary
• Credit Valley Hospital ‐Mississauga
• The Ottawa Hospital Cancer Center‐ Ottawa
• Cancer Centre of Southeastern Ontario –
Kingston
Progress to Date
Centres awaiting REB approval• Juravinski Cancer Centre‐ Hamilton• Nova Scotia Cancer Centre‐Halifax• Vancouver Island Health Authority‐
Victoria• BC Cancer Agency‐ Vancouver
Future Centres• Cancer Care Manitoba ‐Manitoba• Centre Hospitalier Universitaire de
Quebec ‐Quebec City
THE OPPORTUNITY
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Patient Portals
Patient health related Quality of Life
Patient Education
Compliance
Adverse Event reporting
Patient Centred Care
Health Economic Research
‐ Prospective health care cost data
‐ Administrative and Patient derived
‐ Cost forecasting
‐ Determination/Validation of Cost‐Effective Models
Drug Safety
Quality indicators based on drug use
Medication (variances) error prevention research (e.g. FDA risk MAPS)
Compliance and Behavioural research
Phase 4 research
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THE CHALLENGE
INCREASED INFRASTRUCTURAL SUPPORT
Data Entry
Data Monitoring
Site Coordination
Server Upgrades and Enhancement
License and IRB renewals
ENHANCED CAPABILITY
Health Economic Data
Patient Portal
Adverse Event Reporting
Mobile Device Data Entry
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0
5
10
15
20
25
IIIA IIIB IIIC IV (M1A) IV (M1B) IV (M1C)
Presentation stage
Number of Patients
Proportion of Newly diagnosed vs. recurrent patients in Stages III and IV
Recurrent
NewlyDiagnosed
New Diagnosis vs. Recurrent
To determine patient outcome
Link clinical data with pathological and molecular subtype
Evaluate results of novel local and systemic treatments
Objectives of the Research
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Project Advancement
Continuous database expansion• REB approval in all currently approached sites• Recruitment of at least one site per province• Populate database to 2000 participants for AJCC
validation
Advancing data analysis• Complete health economic assessment• Outcomes in BRAF positive patients in 5 centres
New initiatives• Creation of a patient portal• Prospective health economic data collection
Innovation and Advancement In Melanoma Research Through Data Analysis
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