4C Tract Survey Status

Survey Summary

Total Patients

Total Patients	Total Countries	Total Centers
154	8	18

By Country

country	Total Patients
Turkey	86
United Kingdom	29
Serbia	14
Germany	9
Austria	7
Poland	7
Italy	1
Lithuania	1

By Country and Center

country	center	total_patients
United Kingdom	London, Great Ormond Street Hospital	29
Turkey	Ankara, Hacettepe Medical Faculty	22
Turkey	Adana, Cukurova Universitesi	19
Turkey	Istanbul, Cerrahpasa Tıp Fakultesi	12
Turkey	Ankara, Gazi University Hospital	9
Turkey	Istanbul, Marmara University Medical Faculty	9
Turkey	Ankara, Ankara University Faculty of Medicine	7
Turkey	Istanbul, Bakirkoy Children Hospital	4
Turkey	Bursa, Dortcelik Children’s Hospital	3
Turkey	Izmir, Ege University	1
Serbia	Belgrade, University Children’s Hospital	14
Poland	Warsaw, Children’s Memorial Health Institute	7
Lithuania	Vilnius, Vilnius University Children’s Hospital	1
Italy	Bologna, S. Orsola-Malpighi Hospital, Department of Pediatrics	1
Germany	Berlin, Charité Children’s Hospital	5
Germany	Hannover, Hannover Medical School	3
Germany	Heidelberg, Center for Pediatrics and Adolescent Medicine	1
Austria	Vienna, University Children’s Hospital	7

By Year

year	Total Patients	Total Countries	Total Centers
2019	1	1	1
2020	135	7	14
2021	49	6	10
2022	42	5	8
2023	24	3	4
2024	4	3	4

By Country and Year

country	2019	2020	2021	2022	2023	2024	Total Participants
Austria	0	7	6	3	0	0	16
Germany	0	1	2	7	5	2	17
Italy	0	1	1	0	0	0	2
Lithuania	0	0	0	0	0	1	1
Poland	0	5	3	2	0	0	10
Serbia	0	14	13	11	12	0	50
Turkey	1	78	24	19	7	1	130
United Kingdom	0	29	0	0	0	0	29

By Country, Center and Year

country	center	2019	2020	2021	2022	2023	2024	total_participants
Austria	Vienna, University Children’s Hospital	0	7	6	3	0	0	16
Germany	Berlin, Charité Children’s Hospital	0	1	2	4	2	1	10
Germany	Hannover, Hannover Medical School	0	0	0	3	3	0	6
Germany	Heidelberg, Center for Pediatrics and Adolescent Medicine	0	0	0	0	0	1	1
Italy	Bologna, S. Orsola-Malpighi Hospital, Department of Pediatrics	0	1	1	0	0	0	2
Lithuania	Vilnius, Vilnius University Children’s Hospital	0	0	0	0	0	1	1
Poland	Warsaw, Children’s Memorial Health Institute	0	5	3	2	0	0	10
Serbia	Belgrade, University Children’s Hospital	0	14	13	11	12	0	50
Turkey	Adana, Cukurova Universitesi	0	18	2	0	0	0	20
Turkey	Ankara, Ankara University Faculty of Medicine	0	6	7	7	7	0	27
Turkey	Ankara, Gazi University Hospital	0	9	0	0	0	0	9
Turkey	Ankara, Hacettepe Medical Faculty	0	22	0	0	0	0	22
Turkey	Bursa, Dortcelik Children’s Hospital	1	2	0	0	0	0	3
Turkey	Istanbul, Bakirkoy Children Hospital	0	3	4	3	0	0	10
Turkey	Istanbul, Cerrahpasa Tıp Fakultesi	0	9	9	9	0	0	27
Turkey	Istanbul, Marmara University Medical Faculty	0	9	2	0	0	0	11
Turkey	Izmir, Ege University	0	0	0	0	0	1	1
United Kingdom	London, Great Ormond Street Hospital	0	29	0	0	0	0	29

Turkey

country	center	2019	2020	2021	2022	2023	2024	total_participants
Turkey	Ankara, Ankara University Faculty of Medicine	0	6	7	7	7	0	27
Turkey	Istanbul, Cerrahpasa Tıp Fakultesi	0	9	9	9	0	0	27
Turkey	Ankara, Hacettepe Medical Faculty	0	22	0	0	0	0	22
Turkey	Adana, Cukurova Universitesi	0	18	2	0	0	0	20
Turkey	Istanbul, Marmara University Medical Faculty	0	9	2	0	0	0	11
Turkey	Istanbul, Bakirkoy Children Hospital	0	3	4	3	0	0	10
Turkey	Ankara, Gazi University Hospital	0	9	0	0	0	0	9
Turkey	Bursa, Dortcelik Children’s Hospital	1	2	0	0	0	0	3
Turkey	Izmir, Ege University	0	0	0	0	0	1	0

United Kingdom

country	center	year_2020	total_participants
United Kingdom	London, Great Ormond Street Hospital	29	29

Participation by Country & agegroup

country	Age =< 18(N(%))	Age > 18 (N(%))	Total Participants
Austria	13(80%)	3(20%)	16
Germany	13(80%)	4(20%)	17
Italy		2(100%)	2
Lithuania	1(100%)		1
Poland	10(100%)		10
Serbia	46(90%)	4(10%)	50
Turkey	109(80%)	21(20%)	130
United Kingdom	21(70%)	8(30%)	29

Contact Preference

Patient Contact preference summary

Overall Summary

Phone	Online	Both Phone & Online	Missing Follow Up Information
41	25	9	79

By Country

country	Phone	Online	Both Phone & Online	Missing Follow Up Information	Total Participants
Austria	2	2	1	2	7
Germany	0	4	0	5	9
Italy	0	1	0	0	1
Lithuania	0	0	0	1	1
Poland	1	6	0	0	7
Serbia	9	2	1	2	14
Turkey	29	5	2	50	86
United Kingdom	0	5	5	19	29

By Year

status	2019	2020	2021	2022	2023	2024
Phone	0	36	22	19	9	0
Online	0	18	10	8	4	1
Both Phone & Online	0	9	3	2	1	0
Missing Follow Up Information	1	72	14	13	10	3
Total Participants	1	135	49	42	24	4

Follow Up Status

Possible reasons for missing follow-up status survey information—such as follow-up consent date and contact preference (phone or online)—despite having a completed survey record.

Overall Summary

Reasons for Missing FollowUp Information	Total Patients
Death	2
LTFU	3
No Information Provided	33
Others	3
Patients wish	2
Transition to Adult Unit	35

By Country

country	No Information Provided	Transition to Adult Unit	Death	LTFU	Others	Patients wish	Total Participants
Austria	1	1	0	0	0	0	2
Germany	5	0	0	0	0	0	5
Lithuania	0	0	1	0	0	0	1
Serbia	0	2	0	0	0	0	2
Turkey	27	15	1	2	3	1	49
United Kingdom	0	17	0	1	0	1	19

Consent Information

Patients who provided consent but either did not participate in the follow-up survey or have missing survey records.

patient_country	total
Albania	1
Austria	1
Czech Republic	1
Ecuador	1
German	11
Italy	11
Poland	8
Russia	1
Tunisia	1
Turkey	21

Visit Summary

Visit summary per participant across the year.

patid	country	center	2020	2021	2022	2023	2024	2019	total_survey_filled
4CBEL002	Serbia	Belgrade, University Children’s Hospital	1	1	1	1	0	0	4
4CBEL010	Serbia	Belgrade, University Children’s Hospital	1	1	1	1	0	0	4
4CBEL015	Serbia	Belgrade, University Children’s Hospital	1	1	1	1	0	0	4
4CBEL016	Serbia	Belgrade, University Children’s Hospital	1	1	1	1	0	0	4
4CBEL017	Serbia	Belgrade, University Children’s Hospital	1	1	1	1	0	0	4
4CBEL003	Serbia	Belgrade, University Children’s Hospital	1	1	1	1	0	0	4
4CBEL006	Serbia	Belgrade, University Children’s Hospital	1	1	1	1	0	0	4
4CBEL009	Serbia	Belgrade, University Children’s Hospital	1	1	0	1	0	0	3
4CBEL014	Serbia	Belgrade, University Children’s Hospital	1	1	1	1	0	0	4
4CBEL018	Serbia	Belgrade, University Children’s Hospital	1	1	0	0	0	0	2
4CBEL019	Serbia	Belgrade, University Children’s Hospital	1	0	0	0	0	0	1
4CHEI010	Germany	Heidelberg, Center for Pediatrics and Adolescent Medicine	0	0	0	0	1	0	1
4CBEL004	Serbia	Belgrade, University Children’s Hospital	1	1	1	1	0	0	4
4CWAR003	Poland	Warsaw, Children’s Memorial Health Institute	1	0	0	0	0	0	1
4CWAR004	Poland	Warsaw, Children’s Memorial Health Institute	1	0	0	0	0	0	1
4CWAR007	Poland	Warsaw, Children’s Memorial Health Institute	1	1	0	0	0	0	2
4CWAR010	Poland	Warsaw, Children’s Memorial Health Institute	0	0	1	0	0	0	1
4CWAR018	Poland	Warsaw, Children’s Memorial Health Institute	1	1	0	0	0	0	2
4CWAR019	Poland	Warsaw, Children’s Memorial Health Institute	0	0	1	0	0	0	1
4CVIE002	Austria	Vienna, University Children’s Hospital	1	1	1	0	0	0	3
4CVIE003	Austria	Vienna, University Children’s Hospital	1	1	1	0	0	0	3
4CVIE004	Austria	Vienna, University Children’s Hospital	1	0	0	0	0	0	1
4CVIE007	Austria	Vienna, University Children’s Hospital	1	1	0	0	0	0	2
4CVIE008	Austria	Vienna, University Children’s Hospital	1	1	1	0	0	0	3
4CBOL012	Italy	Bologna, S. Orsola-Malpighi Hospital, Department of Pediatrics	1	1	0	0	0	0	2
4CADA003	Turkey	Adana, Cukurova Universitesi	1	1	0	0	0	0	2
4CADA010	Turkey	Adana, Cukurova Universitesi	1	0	0	0	0	0	1
4CADA016	Turkey	Adana, Cukurova Universitesi	1	0	0	0	0	0	1
4CADA019	Turkey	Adana, Cukurova Universitesi	1	0	0	0	0	0	1
4CADA020	Turkey	Adana, Cukurova Universitesi	0	1	0	0	0	0	1
4CADA014	Turkey	Adana, Cukurova Universitesi	1	0	0	0	0	0	1
4CADA023	Turkey	Adana, Cukurova Universitesi	1	0	0	0	0	0	1
4CADA027	Turkey	Adana, Cukurova Universitesi	1	0	0	0	0	0	1
4CADA035	Turkey	Adana, Cukurova Universitesi	1	0	0	0	0	0	1
4CADA034	Turkey	Adana, Cukurova Universitesi	1	0	0	0	0	0	1
4CADA047	Turkey	Adana, Cukurova Universitesi	1	0	0	0	0	0	1
4CADA043	Turkey	Adana, Cukurova Universitesi	1	0	0	0	0	0	1
4CADA057	Turkey	Adana, Cukurova Universitesi	1	0	0	0	0	0	1
4CADA061	Turkey	Adana, Cukurova Universitesi	1	0	0	0	0	0	1
4CADA051	Turkey	Adana, Cukurova Universitesi	1	0	0	0	0	0	1
4CHAN009	Germany	Hannover, Hannover Medical School	0	0	1	1	0	0	2
4CHAN006	Germany	Hannover, Hannover Medical School	0	0	1	1	0	0	2
4CHAN003	Germany	Hannover, Hannover Medical School	0	0	1	1	0	0	2
4CBER009	Germany	Berlin, Charité Children’s Hospital	0	0	1	1	0	0	2
4CBER007	Germany	Berlin, Charité Children’s Hospital	0	1	1	0	0	0	2
4CIS2003	Turkey	Istanbul, Cerrahpasa Tıp Fakultesi	1	1	1	0	0	0	3
4CIS2004	Turkey	Istanbul, Cerrahpasa Tıp Fakultesi	1	0	0	0	0	0	1
4CIS2005	Turkey	Istanbul, Cerrahpasa Tıp Fakultesi	1	1	1	0	0	0	3
4CIS2006	Turkey	Istanbul, Cerrahpasa Tıp Fakultesi	0	1	1	0	0	0	2
4CIS2008	Turkey	Istanbul, Cerrahpasa Tıp Fakultesi	1	0	0	0	0	0	1
4CIS2009	Turkey	Istanbul, Cerrahpasa Tıp Fakultesi	1	1	1	0	0	0	3
4CIS2015	Turkey	Istanbul, Cerrahpasa Tıp Fakultesi	1	0	0	0	0	0	1
4CBER003	Germany	Berlin, Charité Children’s Hospital	0	0	1	0	0	0	1
4CBER012	Germany	Berlin, Charité Children’s Hospital	0	0	1	1	1	0	3
4CIS2019	Turkey	Istanbul, Cerrahpasa Tıp Fakultesi	1	1	1	0	0	0	3
4CIS2020	Turkey	Istanbul, Cerrahpasa Tıp Fakultesi	1	1	1	0	0	0	3
4CIS2021	Turkey	Istanbul, Cerrahpasa Tıp Fakultesi	0	1	1	0	0	0	2
4CIS2024	Turkey	Istanbul, Cerrahpasa Tıp Fakultesi	0	1	1	0	0	0	2
4CIS2025	Turkey	Istanbul, Cerrahpasa Tıp Fakultesi	1	1	1	0	0	0	3
4CIS4002	Turkey	Istanbul, Bakirkoy Children Hospital	0	1	1	0	0	0	2
4CIS4004	Turkey	Istanbul, Bakirkoy Children Hospital	1	1	0	0	0	0	2
4CIS4005	Turkey	Istanbul, Bakirkoy Children Hospital	1	1	1	0	0	0	3
4CIS4009	Turkey	Istanbul, Bakirkoy Children Hospital	1	1	1	0	0	0	3
4CIS6016	Turkey	Istanbul, Marmara University Medical Faculty	1	0	0	0	0	0	1
4CANK025	Turkey	Ankara, Hacettepe Medical Faculty	1	0	0	0	0	0	1
4CIS6015	Turkey	Istanbul, Marmara University Medical Faculty	1	0	0	0	0	0	1
4CIS6002	Turkey	Istanbul, Marmara University Medical Faculty	1	0	0	0	0	0	1
4CIS6013	Turkey	Istanbul, Marmara University Medical Faculty	1	0	0	0	0	0	1
4CIS6005	Turkey	Istanbul, Marmara University Medical Faculty	1	0	0	0	0	0	1
4CIZM055	Turkey	Izmir, Ege University	0	0	0	0	1	0	1
4CBU2003	Turkey	Bursa, Dortcelik Children’s Hospital	0	0	0	0	0	1	1
4CBU2006	Turkey	Bursa, Dortcelik Children’s Hospital	1	0	0	0	0	0	1
4CIS6004	Turkey	Istanbul, Marmara University Medical Faculty	1	1	0	0	0	0	2
4CIS6009	Turkey	Istanbul, Marmara University Medical Faculty	1	0	0	0	0	0	1
4CIS6008	Turkey	Istanbul, Marmara University Medical Faculty	1	1	0	0	0	0	2
4CIS6007	Turkey	Istanbul, Marmara University Medical Faculty	1	0	0	0	0	0	1
4CWAR015	Poland	Warsaw, Children’s Memorial Health Institute	1	1	0	0	0	0	2
4CBEL007	Serbia	Belgrade, University Children’s Hospital	1	1	1	1	0	0	4
4CBEL008	Serbia	Belgrade, University Children’s Hospital	1	1	1	1	0	0	4
4CBU2007	Turkey	Bursa, Dortcelik Children’s Hospital	1	0	0	0	0	0	1
4CADA056	Turkey	Adana, Cukurova Universitesi	1	0	0	0	0	0	1
4CADA005	Turkey	Adana, Cukurova Universitesi	1	0	0	0	0	0	1
4CVIE011	Austria	Vienna, University Children’s Hospital	1	1	0	0	0	0	2
4CADA052	Turkey	Adana, Cukurova Universitesi	1	0	0	0	0	0	1
4CVIE001	Austria	Vienna, University Children’s Hospital	1	1	0	0	0	0	2
4CANK022	Turkey	Ankara, Hacettepe Medical Faculty	1	0	0	0	0	0	1
4CANK003	Turkey	Ankara, Hacettepe Medical Faculty	1	0	0	0	0	0	1
4CANK021	Turkey	Ankara, Hacettepe Medical Faculty	1	0	0	0	0	0	1
4CANK001	Turkey	Ankara, Hacettepe Medical Faculty	1	0	0	0	0	0	1
4CANK004	Turkey	Ankara, Hacettepe Medical Faculty	1	0	0	0	0	0	1
4CANK005	Turkey	Ankara, Hacettepe Medical Faculty	1	0	0	0	0	0	1
4CANK010	Turkey	Ankara, Hacettepe Medical Faculty	1	0	0	0	0	0	1
4CANK011	Turkey	Ankara, Hacettepe Medical Faculty	1	0	0	0	0	0	1
4CANK018	Turkey	Ankara, Hacettepe Medical Faculty	1	0	0	0	0	0	1
4CANK019	Turkey	Ankara, Hacettepe Medical Faculty	1	0	0	0	0	0	1
4CANK006	Turkey	Ankara, Hacettepe Medical Faculty	1	0	0	0	0	0	1
4CANK020	Turkey	Ankara, Hacettepe Medical Faculty	1	0	0	0	0	0	1
4CANK013	Turkey	Ankara, Hacettepe Medical Faculty	1	0	0	0	0	0	1
4CANK017	Turkey	Ankara, Hacettepe Medical Faculty	1	0	0	0	0	0	1
4CANK014	Turkey	Ankara, Hacettepe Medical Faculty	1	0	0	0	0	0	1
4CANK009	Turkey	Ankara, Hacettepe Medical Faculty	1	0	0	0	0	0	1
4CANK023	Turkey	Ankara, Hacettepe Medical Faculty	1	0	0	0	0	0	1
4CANK002	Turkey	Ankara, Hacettepe Medical Faculty	1	0	0	0	0	0	1
4CANK008	Turkey	Ankara, Hacettepe Medical Faculty	1	0	0	0	0	0	1
4CANK2006	Turkey	Ankara, Ankara University Faculty of Medicine	0	1	1	1	0	0	3
4CANK012	Turkey	Ankara, Hacettepe Medical Faculty	1	0	0	0	0	0	1
4CANK1001	Turkey	Ankara, Gazi University Hospital	1	0	0	0	0	0	1
4CANK026	Turkey	Ankara, Hacettepe Medical Faculty	1	0	0	0	0	0	1
4CANK1002	Turkey	Ankara, Gazi University Hospital	1	0	0	0	0	0	1
4CANK1003	Turkey	Ankara, Gazi University Hospital	1	0	0	0	0	0	1
4CANK1004	Turkey	Ankara, Gazi University Hospital	1	0	0	0	0	0	1
4CANK1005	Turkey	Ankara, Gazi University Hospital	1	0	0	0	0	0	1
4CANK1006	Turkey	Ankara, Gazi University Hospital	1	0	0	0	0	0	1
4CANK1007	Turkey	Ankara, Gazi University Hospital	1	0	0	0	0	0	1
4CANK1008	Turkey	Ankara, Gazi University Hospital	1	0	0	0	0	0	1
4CANK2011	Turkey	Ankara, Ankara University Faculty of Medicine	1	1	1	1	0	0	4
4CANK2003	Turkey	Ankara, Ankara University Faculty of Medicine	1	1	1	1	0	0	4
4CANK1009	Turkey	Ankara, Gazi University Hospital	1	0	0	0	0	0	1
4CLON035	United Kingdom	London, Great Ormond Street Hospital	1	0	0	0	0	0	1
4CLON034	United Kingdom	London, Great Ormond Street Hospital	1	0	0	0	0	0	1
4CLON031	United Kingdom	London, Great Ormond Street Hospital	1	0	0	0	0	0	1
4CLON028	United Kingdom	London, Great Ormond Street Hospital	1	0	0	0	0	0	1
4CLON024	United Kingdom	London, Great Ormond Street Hospital	1	0	0	0	0	0	1
4CLON021	United Kingdom	London, Great Ormond Street Hospital	1	0	0	0	0	0	1
4CLON017	United Kingdom	London, Great Ormond Street Hospital	1	0	0	0	0	0	1
4CLON020	United Kingdom	London, Great Ormond Street Hospital	1	0	0	0	0	0	1
4CLON002	United Kingdom	London, Great Ormond Street Hospital	1	0	0	0	0	0	1
4CLON025	United Kingdom	London, Great Ormond Street Hospital	1	0	0	0	0	0	1
4CLON006	United Kingdom	London, Great Ormond Street Hospital	1	0	0	0	0	0	1
4CLON027	United Kingdom	London, Great Ormond Street Hospital	1	0	0	0	0	0	1
4CLON013	United Kingdom	London, Great Ormond Street Hospital	1	0	0	0	0	0	1
4CLON029	United Kingdom	London, Great Ormond Street Hospital	1	0	0	0	0	0	1
4CLON030	United Kingdom	London, Great Ormond Street Hospital	1	0	0	0	0	0	1
4CLON026	United Kingdom	London, Great Ormond Street Hospital	1	0	0	0	0	0	1
4CLON033	United Kingdom	London, Great Ormond Street Hospital	1	0	0	0	0	0	1
4CLON018	United Kingdom	London, Great Ormond Street Hospital	1	0	0	0	0	0	1
4CLON019	United Kingdom	London, Great Ormond Street Hospital	1	0	0	0	0	0	1
4CLON001	United Kingdom	London, Great Ormond Street Hospital	1	0	0	0	0	0	1
4CLON004	United Kingdom	London, Great Ormond Street Hospital	1	0	0	0	0	0	1
4CLON010	United Kingdom	London, Great Ormond Street Hospital	1	0	0	0	0	0	1
4CLON005	United Kingdom	London, Great Ormond Street Hospital	1	0	0	0	0	0	1
4CLON003	United Kingdom	London, Great Ormond Street Hospital	1	0	0	0	0	0	1
4CLON022	United Kingdom	London, Great Ormond Street Hospital	1	0	0	0	0	0	1
4CLON015	United Kingdom	London, Great Ormond Street Hospital	1	0	0	0	0	0	1
4CLON016	United Kingdom	London, Great Ormond Street Hospital	1	0	0	0	0	0	1
4CLON012	United Kingdom	London, Great Ormond Street Hospital	1	0	0	0	0	0	1
4CLON008	United Kingdom	London, Great Ormond Street Hospital	1	0	0	0	0	0	1
4CANK2001	Turkey	Ankara, Ankara University Faculty of Medicine	1	1	1	1	0	0	4
4CANK2005	Turkey	Ankara, Ankara University Faculty of Medicine	1	1	1	1	0	0	4
4CANK2008	Turkey	Ankara, Ankara University Faculty of Medicine	1	1	1	1	0	0	4
4CANK2007	Turkey	Ankara, Ankara University Faculty of Medicine	1	1	1	1	0	0	4
4CADA050	Turkey	Adana, Cukurova Universitesi	1	0	0	0	0	0	1
4CBER013	Germany	Berlin, Charité Children’s Hospital	1	1	0	0	0	0	2
4CVIL004	Lithuania	Vilnius, Vilnius University Children’s Hospital	0	0	0	0	1	0	1