PANCARE PANCARE Working Group Group Working National and - - PowerPoint PPT Presentation
PANCARE PANCARE Working Group Group Working National and Group National and Group Registries and Databases Registries and Databases Report about about Report further work work on on further PANCARE online
Report Report about about further further work work on
PANCARE online PANCARE online questionnaire questionnaire
Completion Quest Quest.: .: Oct
. / November 2008
28 Datasets Datasets (2 (2 Doublettes Doublettes) )
26 Datasets Datasets from from 16 16 countries countries
Database of at least 118,000 118,000 patients patients in total in total ( (avoiding avoiding doublicates doublicates) )
Of those those are are at least at least 80,000 80,000 in FUP in FUP
Of them them deceased deceased: : 12,000 12,000
Most with with regular regular FUP FUP
Most of them them have have data data on
main variables variables
Law challenges challenges: :
anonymous data data, , data data protection protection law law, , ethical ethical committee committee
5 population population-
based registries registries or
childhood childhood cancer cancer registries registries
4
registries / / Late Late effects effects network network
17 Clinical Clinical centres centres / / hospitals hospitals
Catchment area: 14 14 country country 12 12 parts of country, cities parts of country, cities
Cancer Type: all childhood malignancies; all childhood malignancies; 4/26 only e.g. 4/26 only e.g. leukemia leukemia, lymphomas; radiotherapy , lymphomas; radiotherapy
up per patient? patient?
3 sporadically sporadically ( (every every 3 3-
5 years years) )
22 systematically systematically (14 (14 every every year year; ; 8 8 every every 2 2-
10 years years) )
with the Pan with the Pan-
European-
Network?
25 Year Year of
birth
24 Sex Sex
25 Childhood Childhood cancer cancer diagnosis diagnosis
23 Date of Date of diagnosis diagnosis Crude Crude therapy therapy data data
24 Any Any radiotherapy radiotherapy
24 Any Any chemotherapy chemotherapy
24 Any Any surgery surgery
23 Any Any bone bone marrow marrow transplant transplant
17 Any Any other
treatment
Availability Availability of
detailed detailed therapy therapy data data
23 Date of Date of treatment treatment
20 Radiotherapy Radiotherapy field field and dose and dose
22 Type of Type of cytostatic cytostatic drugs drugs
18 Dose Drugs Dose Drugs
21 Type of Type of stem stem cell cell transplant transplant
20 Site of Site of surgery surgery
Vital Vital status status
25 Vital Vital status status (5 to (5 to unlimited unlimited years years after after diag diag.) .) ( (until until 18/19 18/19 yrs yrs of age)
Late Late effects effects
24 Cause of Cause of death death (10 to (10 to unlimited unlimited yrs yrs after after d.) d.) ( (until until 18/19 18/19 yrs yrs of age)
24 Secondary Secondary malignant malignant neoplasms neoplasms (10 to (10 to unlimited unlimited yrs yrs after after d.) d.) ( (until until 18/19 18/19 yrs yrs of age)
13 Others Others
disease,
Biological Biological samples samples
2 Collection Collection not not possible possible
13 Potential to Potential to collect collect
10 Already Already available available
7 Tumour Tumour tissue tissue
1 Normal Normal tissue tissue
6 Blood Blood
2 Saliva Saliva
3 Other Other types types
2 bone bone marrow marrow ( (but but not not of
each case case) )
Potential to collect collect blood blood
Other Other data data
15 Socioeconomic Socioeconomic, , environmental environmental exposures exposures, ,
life-
style factors factors
all patients being involved in the follow all patients being involved in the follow-
up?
15 Yes Yes
No
1 Do Do not not know know
8 In In part part
Ronckers, , Z.
Jakab, G. , G. Pastore Pastore, D. , D. Debling Debling, ,
New members: Claudia Kuehni Kuehni, Daniela , Daniela Kodytkova Kodytkova, Jorgen Olsen , Jorgen Olsen
Two Telephone Telephone-
Conferences (12/2008; 3/2009) (12/2008; 3/2009)
Contact to: to: Gemma Gemma Gatta Gatta ( (EUROCARE EUROCARE), Eva ), Eva Steliarova Steliarova-
Foucher ( (ACCIS ACCIS) )
Additional Questions Questions & & Flow Flow-
Charts To Do: To Do:
Final Adjustment Adjustment of
Questionnaires
Revision of online
Questionnaire ( (Medical Medical Informatics Informatics Mainz, Torsten Panholzer) Mainz, Torsten Panholzer)
Put Questionnaires Questionnaires online
for new new completion completion
How is Long Long-
term surveillance (LTS) organized in your in your country? country? Please describe in short Please describe in short (one page) how long (one page) how long-
term follow-
up of former childhood and adolescent cancer patients is organized former childhood and adolescent cancer patients is organized in your country. in your country.
Who is your central representative/coordinator central representative/coordinator? ?
Please list all institutions all institutions involved in this process and give a involved in this process and give a short description of these institutions. short description of these institutions.
Please define the role role of all
institutions involved in this involved in this process. process.
How many patients many patients are involved in your LTS? are involved in your LTS? (inclusion criteria; deceased/ alive) (inclusion criteria; deceased/ alive)
How do you do you follow up follow up former patients? former patients?
How often do you follow them up? do you follow them up?
Who does follow them up? does follow them up?
Further particulars: : Please feel free to add those information especially relevant fo Please feel free to add those information especially relevant for r your country not hit by the questions above. your country not hit by the questions above.
Cécile Ronckers, Leontien Kremer
Goal
Detailed description of all relevant aspects of cohorts/populations to
(1) create a complete inventory of the “Pan European Cohort” and to (2) support future activities including research, patient care and lobbying
Patient Care Outcome: Mortality SMN Health Problems
Item 1: CHILDHOOD CANCER COHORT DEFINITION
based
studies/cohorts/patient populations
completeness
used
coverage in catchment area of clinic/cohort
Item a: INCLUSION CRITERIA Inclusion criteria for childhood cancer survivor cohort (5-yr survivorship taken as example)
Item 2: EXCLUDED
survivor cohort (if possible per exclusion criterion)
item 3: SURVIVOR COHORT DEFINITION
Inclusion criteria
TREATMENT INFORMATION
To inventory how countries
Item b: LATE EFFECTS CARE
patients?
available for patient care?
needs?
Items 4, 5, 6 N in care N without care N seen at least once?
Item c: VITAL STATUS FOLLOW-UP Methods if vital status tracing
vital status and date of death
cause of death
into ICD?
Items 7 and 8
Item d: SMN follow-up Ascertainment of SMN
Definition of SMN
(entry until exit year)
chart review (available/possible)
Items 9 and 10
Item e: Health outcomes
Inclusion/ exclusion criteria could change from research question to research question (e.g. years of survival, contact to patients of deceased patients or not ….)
Revision of
Questionnaire after after Definition of Definition of inclusion inclusion criteria criteria for for research research questions questions ( (one
global database database and and extractions extractions per per research research question question) )
Different inclusion inclusion criteria criteria per per research research field field possible possible
Definition of
minimum set set of relevant
variables per per research research question question
Asking the the data data from from research research coordinator coordinator per per country country