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 questionnaire questionnaire PANCARE online
Recapitulation Recapitulation online Questionnaire Questionnaire online Completion Completion Quest Quest.: .: Oct Oct. / November 2008 . / November 2008 � � � ) � 28 Datasets Datasets (2 (2 Doublettes Doublettes) 26 Datasets Datasets from from 16 16 countries countries 28 26 � � Database of at least Database of at least 118,000 118,000 patients patients in total in total � � (avoiding avoiding doublicates doublicates) ) ( Of Of those those are are at least at least 80,000 80,000 in FUP in FUP � � Of them them deceased deceased: : 12,000 � � Of 12,000 Most with with regular regular FUP FUP � Most � Most of them them have have data data on on main main variables variables � Most of � Law Law challenges challenges: : only only anonymous anonymous data data, , data data protection protection � � law, , ethical ethical committee committee law
Questions most most relevant relevant Questions 1. Please list your affiliation and the details 1. Please list your affiliation and the details of your registry / centre of your registry / centre � 5 5 population- -based based registries registries or or population � childhood cancer cancer registries registries childhood � 4 4 other registries registries / / Late Late effects effects network network other � � 17 17 Clinical Clinical centres centres / / hospitals hospitals � � Catchment area: Catchment area: � 14 country country 14 12 parts of country, cities parts of country, cities 12
� Cancer Type: Cancer Type: � all childhood malignancies; all childhood malignancies; 4/26 only e.g. leukemia leukemia, lymphomas; radiotherapy , lymphomas; radiotherapy 4/26 only e.g. � 11. How often you are able to conduct a follow 11. How often you are able to conduct a follow- -up per up per � patient? patient? � 3 3 sporadically sporadically (every ( every 3 3- -5 5 years years) ) � � 22 22 systematically systematically (14 every year year; ; (14 every � 8 8 every 2 every 2- -10 10 years years) )
13. Which data are available to potentially collaborate 13. Which data are available to potentially collaborate � � with the Pan- with the Pan -European European- -Network? Network? 25 Year of of birth birth � 25 Year � 24 Sex � 24 Sex � 25 25 Childhood Childhood cancer cancer diagnosis diagnosis � � 23 Date of diagnosis diagnosis � 23 Date of � Availability of of Availability detailed therapy therapy data data detailed Crude Crude therapy therapy data data 24 Any radiotherapy radiotherapy � 24 Any � � 23 23 Date of Date of treatment treatment � 24 Any chemotherapy chemotherapy � 24 Any � � 20 20 Radiotherapy field field Radiotherapy � 24 24 Any Any surgery surgery � � and dose and dose 23 Any bone bone marrow marrow transplant transplant � 23 Any � � 22 22 Type of cytostatic cytostatic Type of � 17 Any other other treatment treatment � � 17 Any drugs drugs � 18 18 Dose Drugs Dose Drugs � e.g. Biotherapy � � 21 21 Type of Type of stem stem cell cell � transplant transplant � 20 20 Site of surgery surgery Site of �
Vital status status Vital 25 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) of age) ( Late effects effects Late 24 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) of age) ( 24 Secondary Secondary malignant malignant neoplasms neoplasms � 24 � (10 to (10 to unlimited unlimited yrs yrs after after d.) d.) (until until 18/19 18/19 yrs yrs of age) of age) ( 13 13 Others Others � � e.g. Cardiovascular diseases, osteoporosis, lung � disease, fertility, offsprings � any possible late effect � phychological major late effects � see questionnaire at www.bccss.bham.ac.uk �
Biological samples samples Biological 2 Collection not not possible possible 2 Collection � � 13 Potential to collect collect � 13 Potential to � 10 Already available available � 10 Already � � 7 7 Tumour tissue tissue Tumour � � 1 1 Normal tissue tissue Normal � � 6 6 Blood Blood � � 2 2 Saliva Saliva � � 3 3 Other Other types types � � 2 2 bone bone marrow marrow ( (but but not not of of each each case case) ) � � Potential to Potential to collect collect blood blood � Other data data Other 15 15 Socioeconomic Socioeconomic, , environmental environmental exposures exposures, , � � or life life- -style style factors factors or 14. Could you potentially contribute these variables for 14. Could you potentially contribute these variables for � � all patients being involved in the follow- -up? up? all patients being involved in the follow 15 Yes � 15 Yes � 0 0 No No � � 1 Do not not know know � 1 Do � 8 In part part � 8 In �
What we we did did since since the the What meeting in Graz in Graz … … meeting M. Hawkins, M. Heymans, L. Kremer/C. M. Hawkins, M. Heymans, L. Kremer/C. Ronckers Ronckers, , � � Z. Jakab Jakab, G. , G. Pastore Pastore, D. , D. Debling Debling, , Z. New members: Claudia Kuehni Kuehni, Daniela , Daniela Kodytkova Kodytkova, Jorgen Olsen , Jorgen Olsen New members: Claudia � � Two Telephone Telephone- -Conferences Conferences (12/2008; 3/2009) (12/2008; 3/2009) Two � � Contact Contact to: to: � � Gemma Gatta Gatta ( (EUROCARE EUROCARE), Eva ), Eva Steliarova Steliarova- -Foucher Foucher ( (ACCIS ACCIS) ) Gemma Additional Questions Questions & & Flow Flow- -Charts Charts Additional � � To Do: To Do: Final Adjustment Adjustment of of Questionnaires Questionnaires Final � � Revision of Revision of online online Questionnaire Questionnaire � � (Medical Medical Informatics Informatics Mainz, Torsten Panholzer) Mainz, Torsten Panholzer) ( Put Put Questionnaires Questionnaires online online for for new new completion completion � �
Questions to to nominated nominated Questions coordinators per per country country coordinators How is Long Long- -term surveillance (LTS) organized term surveillance (LTS) organized in your in your How is � � country? country? Please describe in short Please describe in short (one page) how long (one page) how long- -term follow term follow- -up of 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? ? Who is your � � Please list all institutions all institutions involved in this process and give a involved in this process and give a Please list � � short description of these institutions. short description of these institutions.
Questions to to nominated nominated Questions coordinators per per country country (2) (2) coordinators Please define the role role of all of all institutions institutions involved in this involved in this � Please define the � process. process. How many patients many patients are involved in your LTS? are involved in your LTS? How � � (inclusion criteria; deceased/ alive) (inclusion criteria; deceased/ alive) How do you do you follow up follow up former patients? former patients? How � � How often do you follow them up? do you follow them up? How often � � Who does follow them up? does follow them up? Who � � Further particulars: : Further particulars � � Please feel free to add those information especially relevant for r Please feel free to add those information especially relevant fo 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
Flowcharts � Patient Care � Outcome: � Mortality � SMN � Health Problems
Example Example
Item 1: CHILDHOOD CANCER COHORT DEFINITION - Population-based v.s. hospital- based - Regional v.s. nation-wide - Overlap in existing studies/cohorts/patient populations - Method of case ascertainment - Completeness - Sources/methods used to ascertain completeness - Potential additional sources to be used - Estimated completeness of coverage in catchment area of clinic/cohort - Number of patients
Item a: INCLUSION CRITERIA Inclusion criteria for childhood cancer survivor cohort (5-yr survivorship taken as example)
Item 2: EXCLUDED No. patients excluded from survivor cohort (if possible per exclusion criterion)
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