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Registered:	Unique patient records with complete demographic information.
Completed:	All the registered records but to be counted as Completed there must be presence of all the following: age of onset, age at surgery, at least one surgical procedure, Yale Global Tic Severity Scale entries for baseline and at least one other timepoint, and at least one entry for DBS programming.

Participant Characteristics
	Counts
Number of Tourette DBS participants registered	377
Number of participants with full patient characteristics	224
Number of centers participating	36
Number of centers who have submitted Data	377
Total Number of DBS Leads	774
Number of DBS leads with Measured Locations	97

General Participant Characteristics
	All Targets (n=377)
	Mean	Range
Age at Onset	8.4	2-58
Age at Diagnosis	12.7	2-60
Age at DBS Surgery	27.6	11-73
	# of Patients	% of Cohort
History of OCD	208	55%
History of ADD	122	32%
History of Depression	145	38%
History of Anxiety	129	34%
History of Self-Injurious Behavior	116	31%

Completed Participant Characteristics
	All Targets (n=224)
	Mean	Range
Age at Onset	8.5	2-58
Age at Diagnosis	13.4	2-60
Age at DBS Surgery	28.2	11-73
	# of Patients	% of Cohort
History of OCD	125	56%
History of ADD	78	35%
History of Depression	85	38%
History of Anxiety	75	33%
History of Self-Injurious Behavior	78	35%

Brain Targeting

n=18

n=201

n=52

n=106

n=26

n=369

Numbers reflect individual leads targeting each brain region.

Brain Targets & Leads

	Counts
Total Number Participants	377
Participants with Unilateral Leads	4
Participants with Bilateral Leads	360
Participants with Dual Leads	11
Total Number of DBS Leads	774
Total Number Explants	7
Target	Participant Count	Lead Count	Explants
ALIC-NA	9	18
Anterior GPi	101	201
Ce-Spv-Voi	13	26
CM/PFc Thalamus	184	369	7
GPi	26	52
GPi+CMPF	1	2
Posterior GPi	53	106

Cases Where Multiple Targets Were Implanted

Targets							Count of Patients
ALIC-NA	Anterior GPi	CM/PFc Thalamus	Ce-Spv-Voi	GPi	GPi+CMPF	Posterior GPi
Y	Y						0
Y	Y	Y					1
Y	Y	Y	Y				0
Y	Y	Y		Y			0
Y	Y	Y			Y		0
Y	Y	Y				Y	0
Y	Y		Y				0
Y	Y		Y	Y			0
Y	Y		Y		Y		0
Y	Y		Y			Y	0
Y	Y			Y			0
Y	Y				Y		0
Y	Y				Y	Y	0
Y	Y			Y	Y		0
Y	Y			Y		Y	0
Y	Y					Y	0
Y		Y					3
Y		Y	Y				0
Y		Y	Y	Y			0
Y		Y	Y		Y		0
Y		Y	Y			Y	0
Y		Y		Y			0
Y		Y			Y		0
Y		Y			Y	Y	0
Y		Y		Y	Y		0
Y		Y		Y		Y	0
Y		Y				Y	0
Y			Y				0
Y			Y	Y			0
Y			Y		Y		0
Y			Y		Y	Y	0
Y			Y	Y	Y		0
Y			Y	Y		Y	0
Y			Y			Y	0
Y				Y			0
Y					Y		0
Y					Y	Y	0
Y				Y	Y		0
Y				Y	Y	Y	0
Y				Y		Y	0
Y						Y	0
	Y	Y					4
	Y	Y	Y				0
	Y	Y	Y	Y			0
	Y	Y	Y		Y		0
	Y	Y	Y			Y	0
	Y	Y		Y			0
	Y	Y			Y		0
	Y	Y			Y	Y	0
	Y	Y		Y	Y		0
	Y	Y		Y		Y	0
	Y	Y				Y	0
	Y		Y				0
	Y		Y	Y			0
	Y		Y		Y		0
	Y		Y		Y	Y	0
	Y		Y	Y	Y		0
	Y		Y	Y		Y	0
	Y		Y			Y	0
	Y			Y			0
	Y				Y		0
	Y				Y	Y	0
	Y			Y	Y		0
	Y			Y	Y	Y	0
	Y			Y		Y	0
	Y					Y	1
		Y	Y				0
		Y	Y	Y			0
		Y	Y		Y		0
		Y	Y		Y	Y	0
		Y	Y	Y	Y		0
		Y	Y	Y		Y	0
		Y	Y			Y	0
		Y		Y			1
		Y			Y		0
		Y			Y	Y	0
		Y		Y	Y		0
		Y		Y	Y	Y	0
		Y		Y		Y	0
		Y				Y	1
			Y	Y			0
			Y		Y		0
			Y		Y	Y	0
			Y	Y	Y		0
			Y	Y	Y	Y	0
			Y	Y		Y	0
			Y			Y	0
					Y	Y	0
				Y	Y		0
				Y	Y	Y	0
				Y		Y	0

Programming Data


Time Point 6 Months
Lead	Lead(s)	Patient(s)	Pulse Width(µs)	Freq(Hz)	Amplitude(volts)	Current(mA)
CM/PFc Thalamus	254	124	110	130	2.95	0
ALIC-NA	10	5	90	130	3.20	0
Posterior GPi	82	41	98	152	3.29	0
Anterior GPi	94	47	88	135	1.98	1
Ce-Spv-Voi	16	7	92	132	4.39	0
GPi	24	12	87	141	2.92	1


Time Point 1 Years
Lead	Lead(s)	Patient(s)	Pulse Width(µs)	Freq(Hz)	Amplitude(volts)	Current(mA)
CM/PFc Thalamus	200	101	118	133	3.14	0
ALIC-NA	10	5	96	134	3.40	0
Posterior GPi	84	42	113	151	2.94	0
Anterior GPi	106	53	98	130	2.41	1
Ce-Spv-Voi	22	10	93	134	4.03	0
GPi	8	4	93	143	4.23	0


Time Point 2 Years
Lead	Lead(s)	Patient(s)	Pulse Width(µs)	Freq(Hz)	Amplitude(volts)	Current(mA)
CM/PFc Thalamus	117	59	118	135	3.15	0
ALIC-NA	4	2	105	135	3.50	0
Posterior GPi	58	29	102	155	2.69	1
Anterior GPi	90	45	109	116	2.56	1
Ce-Spv-Voi	8	4	90	130	3.98	0
GPi	2	1	60	130	3.10	0

Active Contacts

Time Point 2 Years

Medtronic	Contact (# of records w/contact active)
Anode	2 (6), 6 (3), 0 (9), Case (153), 11 (3), 3 (7), 7 (1), 4 (7), 8 (2), 1 (5), 9 (2)
Cathode	2 (37), 0 (38), 1 (62), 3 (17), 7 (6), 6 (18), 4 (23), 5 (26), 8 (9), 10 (10), 11 (2), 9 (8)

Neuropace	Contact (# of records w/contact active)
Anode	0 (2)
Cathode

Time Point 6 Months

Medtronic	Contact (# of records w/contact active)
Anode	0 (13), 3 (18), 7 (3), Case (312), 5 (4), 1 (4), 4 (10), 8 (2), 2 (5), 11 (3)
Cathode	7 (8), 3 (30), 1 (125), 5 (47), 0 (56), 2 (84), 11 (9), 9 (26), 10 (31), 4 (24), 6 (11), 8 (13)

Neuropace	Contact (# of records w/contact active)
Anode	0 (3), Case (7)
Cathode	1 (2), 0 (7)

Time Point 1 Years

Medtronic	Contact (# of records w/contact active)
Anode	0 (10), 4 (10), Case (261), 7 (4), 6 (4), 2 (5), 3 (11), 1 (8), 5 (3), 8 (1), 9 (4), 10 (2), 11 (1)
Cathode	3 (33), 7 (7), 1 (100), 5 (40), 6 (19), 0 (55), 2 (77), 4 (31), 8 (15), 9 (23), 10 (27), 11 (10)

Neuropace	Contact (# of records w/contact active)
Anode	0 (1), 2 (1), 3 (1)
Cathode	1 (2)

YGTSS Total - Records Submitted
	All Targets			ALIC-NA			Anterior GPi			Ce-Spv-Voi			CM/PFc Thalamus			GPi			GPi+CMPF			Posterior GPi
Timepoint	n	Mean	Δ % of Means	n	Mean	Δ % of Means	n	Mean	Δ % of Means	n	Mean	Δ % of Means	n	Mean	Δ % of Means	n	Mean	Δ % of Means	n	Mean	Δ % of Means	n	Mean	Δ % of Means
Baseline	334	74.2	-	4	58.5	-	87	76.1	-	10	74.1	-	153	75.8	-	29	64.8	-	1	71	-	50	73.2	-
6 Month	230	44.3	40.3	4	40.3	31.11	60	44.1	42.05	7	42.4	42.78	110	44	41.95	8	40.8	37.04	0	0	-	41	47	35.79
12 Month	225	41.5	44.07	4	42.8	26.84	57	39	48.75	9	45.3	38.87	110	41.5	45.25	2	48.5	25.15	0	0	-	43	43.5	40.57
24 Month	128	40.6	45.28	2	37	36.75	37	44.4	41.66	5	59.8	19.3	52	39.5	47.89	4	40.5	37.5	0	0	-	28	34.3	53.14

These numbers represent the total # of records which have a submitted value at the times listed.

Adverse Event Summary Report
Type of AE	Number of AE Records	Number of Closed Events
Surgical	48	47
Psychiatric	32	25
General	190	109

Adverse Events Chart List

Timepoint
6 Month

All Targets

ALIC-NA

Anterior GPi

Ce-Spv-Voi

CM/PFc Thalamus

GPi

GPi+CMPF

Posterior GPi

n ( 137 )

subjects ( 42 )

% {Total Cohort}

n ( 0 )

subjects ( 0 )

n ( 21 )

subjects ( 7 )

n ( 0 )

subjects ( 0 )

n ( 67 )

subjects ( 24 )

n ( 0 )

subjects ( 0 )

n ( 0 )

subjects ( 0 )

n ( 59 )

subjects ( 14 )

Explants

2.38%

0.00%

4.17%

0.00%

Infections

4.76%

0.00%

8.33%

0.00%

Hemorrhages

4.76%

0.00%

4.17%

0.00%

7.14%

Programming Related

112

80.95%

0.00%

42.86%

0.00%

70.83%

0.00%

100.00%

Other Adverse Events

132

100.00%

0.00%

100.00%

0.00%

100.00%

0.00%

100.00%

Click to Show Other Adverse Events Details

All Targets
n ( # )	Number of adverse events by category (where # is total number of adverse events).
subjects ( # )	Number of subjects with an adverse event by category (where # is total number of subjects with leads).
% {Total Cohort}	Total number of leads with an adverse event out of total subjects.

Individual Target
n ( # )	Number of adverse events by category for the target (where # is total number of adverse events for the target).
subjects ( # )	Number of participants with an adverse event and the target by category (where # is total number of participants with the target).
%	Percent of total number of participants with the target by category.

Timepoint
1 Year

All Targets

ALIC-NA

Anterior GPi

Ce-Spv-Voi

CM/PFc Thalamus

GPi

GPi+CMPF

Posterior GPi

n ( 158 )

subjects ( 49 )

% {Total Cohort}

n ( 0 )

subjects ( 0 )

n ( 22 )

subjects ( 7 )

n ( 0 )

subjects ( 0 )

n ( 79 )

subjects ( 29 )

n ( 0 )

subjects ( 0 )

n ( 0 )

subjects ( 0 )

n ( 67 )

subjects ( 16 )

Explants

2.04%

0.00%

3.45%

0.00%

Infections

8.16%

0.00%

13.79%

0.00%

Hemorrhages

4.08%

0.00%

3.45%

0.00%

6.25%

Programming Related

129

77.55%

0.00%

42.86%

0.00%

65.52%

0.00%

100.00%

Other Adverse Events

150

97.96%

0.00%

100.00%

0.00%

96.55%

0.00%

100.00%

Click to Show Other Adverse Events Details

All Targets
n ( # )	Number of adverse events by category (where # is total number of adverse events).
subjects ( # )	Number of subjects with an adverse event by category (where # is total number of subjects with leads).
% {Total Cohort}	Total number of leads with an adverse event out of total subjects.

Individual Target
n ( # )	Number of adverse events by category for the target (where # is total number of adverse events for the target).
subjects ( # )	Number of participants with an adverse event and the target by category (where # is total number of participants with the target).
%	Percent of total number of participants with the target by category.

Timepoint
2 Year

All Targets

ALIC-NA

Anterior GPi

Ce-Spv-Voi

CM/PFc Thalamus

GPi

GPi+CMPF

Posterior GPi

n ( 184 )

subjects ( 53 )

% {Total Cohort}

n ( 0 )

subjects ( 0 )

n ( 25 )

subjects ( 7 )

n ( 0 )

subjects ( 0 )

n ( 90 )

subjects ( 32 )

n ( 0 )

subjects ( 0 )

n ( 0 )

subjects ( 0 )

n ( 79 )

subjects ( 17 )

Explants

9.43%

0.00%

15.62%

0.00%

Infections

11.32%

0.00%

18.75%

0.00%

Hemorrhages

3.77%

0.00%

3.12%

0.00%

5.88%

Programming Related

152

79.25%

0.00%

42.86%

0.00%

68.75%

0.00%

100.00%

Other Adverse Events

169

96.23%

0.00%

100.00%

0.00%

93.75%

0.00%

100.00%

Click to Show Other Adverse Events Details

All Targets
n ( # )	Number of adverse events by category (where # is total number of adverse events).
subjects ( # )	Number of subjects with an adverse event by category (where # is total number of subjects with leads).
% {Total Cohort}	Total number of leads with an adverse event out of total subjects.

Individual Target
n ( # )	Number of adverse events by category for the target (where # is total number of adverse events for the target).
subjects ( # )	Number of participants with an adverse event and the target by category (where # is total number of participants with the target).
%	Percent of total number of participants with the target by category.

Timepoint
3 Year

All Targets

ALIC-NA

Anterior GPi

Ce-Spv-Voi

CM/PFc Thalamus

GPi

GPi+CMPF

Posterior GPi

n ( 197 )

subjects ( 54 )

% {Total Cohort}

n ( 0 )

subjects ( 0 )

n ( 28 )

subjects ( 7 )

n ( 0 )

subjects ( 0 )

n ( 90 )

subjects ( 32 )

n ( 0 )

subjects ( 0 )

n ( 0 )

subjects ( 0 )

n ( 89 )

subjects ( 18 )

Explants

11.11%

0.00%

15.62%

0.00%

5.56%

Infections

11.11%

0.00%

18.75%

0.00%

Hemorrhages

3.70%

0.00%

3.12%

0.00%

5.56%

Programming Related

165

79.63%

0.00%

42.86%

0.00%

68.75%

0.00%

100.00%

Other Adverse Events

181

94.44%

0.00%

100.00%

0.00%

93.75%

0.00%

94.44%

Click to Show Other Adverse Events Details

All Targets
n ( # )	Number of adverse events by category (where # is total number of adverse events).
subjects ( # )	Number of subjects with an adverse event by category (where # is total number of subjects with leads).
% {Total Cohort}	Total number of leads with an adverse event out of total subjects.

Individual Target
n ( # )	Number of adverse events by category for the target (where # is total number of adverse events for the target).
subjects ( # )	Number of participants with an adverse event and the target by category (where # is total number of participants with the target).
%	Percent of total number of participants with the target by category.

Timepoint
4 Year

All Targets

ALIC-NA

Anterior GPi

Ce-Spv-Voi

CM/PFc Thalamus

GPi

GPi+CMPF

Posterior GPi

n ( 218 )

subjects ( 57 )

% {Total Cohort}

n ( 0 )

subjects ( 0 )

n ( 36 )

subjects ( 7 )

n ( 0 )

subjects ( 0 )

n ( 93 )

subjects ( 34 )

n ( 0 )

subjects ( 0 )

n ( 0 )

subjects ( 0 )

n ( 99 )

subjects ( 19 )

Explants

15.79%

0.00%

17.65%

0.00%

15.79%

Infections

12.28%

0.00%

20.59%

0.00%

Hemorrhages

3.51%

0.00%

2.94%

0.00%

5.26%

Programming Related

184

78.95%

0.00%

42.86%

0.00%

67.65%

0.00%

100.00%

Other Adverse Events

198

91.23%

0.00%

100.00%

0.00%

91.18%

0.00%

89.47%

Click to Show Other Adverse Events Details

All Targets
n ( # )	Number of adverse events by category (where # is total number of adverse events).
subjects ( # )	Number of subjects with an adverse event by category (where # is total number of subjects with leads).
% {Total Cohort}	Total number of leads with an adverse event out of total subjects.

Individual Target
n ( # )	Number of adverse events by category for the target (where # is total number of adverse events for the target).
subjects ( # )	Number of participants with an adverse event and the target by category (where # is total number of participants with the target).
%	Percent of total number of participants with the target by category.

Timepoint
5 Year

All Targets

ALIC-NA

Anterior GPi

Ce-Spv-Voi

CM/PFc Thalamus

GPi

GPi+CMPF

Posterior GPi

n ( 270 )

subjects ( 65 )

% {Total Cohort}

n ( 7 )

subjects ( 3 )

n ( 51 )

subjects ( 7 )

n ( 0 )

subjects ( 0 )

n ( 108 )

subjects ( 41 )

n ( 0 )

subjects ( 0 )

n ( 0 )

subjects ( 0 )

n ( 119 )

subjects ( 19 )

Explants

18.46%

33.33%

0.00%

21.95%

0.00%

15.79%

Infections

18.46%

66.67%

0.00%

26.83%

0.00%

Hemorrhages

3.08%

0.00%

2.44%

0.00%

5.26%

Programming Related

235

80.00%

100.00%

42.86%

0.00%

70.73%

0.00%

116

100.00%

Other Adverse Events

242

90.77%

100.00%

0.00%

90.24%

0.00%

115

89.47%

Click to Show Other Adverse Events Details

All Targets
n ( # )	Number of adverse events by category (where # is total number of adverse events).
subjects ( # )	Number of subjects with an adverse event by category (where # is total number of subjects with leads).
% {Total Cohort}	Total number of leads with an adverse event out of total subjects.

Individual Target
n ( # )	Number of adverse events by category for the target (where # is total number of adverse events for the target).
subjects ( # )	Number of participants with an adverse event and the target by category (where # is total number of participants with the target).
%	Percent of total number of participants with the target by category.

International Tourette Deep Brain Stimulation Database and Registry

Participant Characteristics

General Participant Characteristics

All Targets (n=377)

Completed Participant Characteristics

All Targets (n=224)

Brain Targeting

Brain Targets & Leads

Cases Where Multiple Targets Were Implanted

Programming Data

Active Contacts

YGTSS Total - Records Submitted

Adverse Event Summary Report

Adverse Events Chart List