Subject: For action: Consultation Regarding TESSy Data Request from Third Party (IRCSS, Italy)
From: "Tuberculosis" <[email-masked]>
To: "Vinciane SIZAIRE" <[email-masked]>,Wouter Arrazola de Oñate <[email-masked]>,Jiří Wallenfels <[email-masked]>, "slezak.pavel" <[email-masked]>, "Anders Koch" <[email-masked]>, "Piret Viiklepp" <[email-masked]>, "Hanna Soini" <[email-masked]>, "Hanna Soini" <[email-masked]>, "Delphine Viriot" <[email-masked]>, "Jean-Paul GUTHMANN" <[email-masked]>, "KroegerS" <[email-masked]>,Lena Bös <[email-masked]>, "Teresa Domaszewska" <[email-masked]>, "s.chatzianastasiou" <
Cc: "NC_CCB_Austria" <[email-masked]>, "sigrid.kiermayr" <[email-masked]>, "koen.blot" <[email-masked]>, <[email-masked]>, "Zhivka Getsova" <[email-masked]>, "Iva Christova" <[email-masked]>, "kcapak" <[email-masked]>, "bernard.kaic" <[email-masked]>, "Elisavet Constantinou" <[email-masked]>, <[email-masked]>,Hana Orlíková <[email-masked]>,Kamilla Grønborg Laut <[email-masked]>, "Stine Ulendorf Jacobsen" <[email-masked]>,Kärt Sõber <[email-masked]>, "TA Info" <[email-masked]>, "Hanna Sepp" <
Date: Mon, 26 Aug 2024 16:06:28 +0300

Tähelepanu! Tegemist on väljastpoolt asutust saabunud kirjaga. Tundmatu 
saatja korral palume linke ja faile mitte avada.

Dear Tuberculosis Network members,

This is a formal notification from ECDC concerning a recent request we have 
received for sharing of indicator-based surveillance data collected and 
stored in the European Surveillance System (TESSy).

A third-party entity has requested access to specific datasets held by our 
organization, with the intent of conducting research. This notification 
serves to inform you about this data request and to solicit any comments or 
objections you may have.

The organization requesting data: IRCCS Ospedale San Raffaele, Milan

The requester is specifically seeking access to: Case-based data for 
tuberculosis and isolates-based results available at ECDC.

The variables requested are:

1. Age

2. BeijingGenotype

3. BornReportingCountry

4. CountryOfBirth

5. CountryOfNationality

6. DataSource

7. DateOfDiagnosis

8. DateOfEntryToCountry

9. DateOfNotification

10. ECDCIsolateID

11. EnrolledToTreatment

12. Gender

13. HIVStatus

14. IsolateId

15. MajorSiteOfTB

16. MinorSiteOfTB

17. NationalityReportingCountry

18. Outcome12Months

19. Outcome24Months

20. Outcome36Months

21. Pathogen

22. PlaceOfNotification

23. PlaceOfResidence

24. PrevDiagnosis

25. PrevDiagnosisYear

26. PrevTreatment

27. PrevTreatmentCompletion

28. RecordId

29. RecordType

30. ReportingCountry

31. ResultCulture

32. ResultMicroscopy

33. ResultOtherTest

34. SIR_AMK

35. SIR_BDQ

36. SIR_INH

37. SIR_LVX

38. SIR_RIF

Please note, that ECDC will not release country reported RecordID, age will 
be aggregated by age groups and dates will be released as quarterly 
information.

Time period to be covered:

January 2015 – December 2023

Declared objectives and analysis plan:

“Analysis of the genomes and epidemiological/clinical data of MTB strains 
collected between January 2015 and December 2023 will be performed to define 
the evolution in time of lineages circulating, resistance profiles, number 
of transmission clusters (including cross borders clusters), rate of 
notification in arrival vs origin country, focusing on any relevant 
difference in TB incidence/prevalence/severity/resistance in the migrant 
population coming from conflict areas in comparison to local and migrant 
population coming from non-conflict areas.”.

We have thoroughly reviewed this request for compliance with the ECDC Policy 
on data submission, access and the use of data within TESSy and Article 4 of 
Regulation (EC) No 1049/2001 regarding public access to European Parliament, 
Council and Commission documents, and have identified no issues that would 
prevent the sharing of this data.

Barring any objections from your side, we intend to share the requested 
dataset with the third-party in the coming weeks.

Any potential objections should be grounded on Article 4 of Regulation (EC) 
No 1049/2001. If you have any such concerns, we kindly request that you 
notify us by 2 September 2024.

If we do not receive any response from your side by this date, we will 
consider that there are no objections and will proceed with the data 
sharing.

We appreciate your attention to this matter and look forward to your prompt 
response.

Best regards,

ECDC TB team

European Centre for Disease Prevention and Control (ECDC)Gustav III:s boulevard 40, 169 73 Solna, Sweden

Phone +46 (0)8 58 60 10 00

 <https://www.ecdc.europa.eu/> www.ecdc.europa.eu

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Confidentiality Notice
If you are not the intended recipient of this message, you are hereby kindly 
requested, to, consecutively, refrain from disclosing its content to any 
third party, delete it and inform its sender of the erroneous transmittal.

Classified as ECDC NORMAL