Column

Total Requests

152

Acepted Requests

129 (85%)

Denied Requests

22 (14%)

Demographics

N

%

Race

129

100%

White

99

77%

Black or African American

26

20%

Asian

4

3%

N

%

Ethnicity

129

100%

Not Hispanic

124

96%

Hispanic

5

4%

Age

Total

URG

N

%

N

%

Accepted Requests

129

100%

34

26%

50-59

11

9%

3

27%

60-69

28

22%

4

14%

70-79

44

34%

6

14%

80-89

26

20%

13

50%

90-99

20

16%

8

40%

Research Duration

Total

URG

N

%

N

%

Accepted Requests

129

100%

34

26%

00-01 years

10

8%

2

20%

02-03 years

8

6%

0

0%

04-05 years

23

18%

4

17%

06-07 years

19

15%

4

21%

08-09 years

19

15%

5

26%

10-11 years

13

10%

4

31%

>12 years

37

29%

15

41%

Column

Summary of Concern Areas

Total

URG

N

%

N

%

Concern Areas

179

100%

46

26%

Research Related Concerns

56

31%

17

30%

Retention concern

38

68%

10

26%

Brain donation

14

25%

6

43%

Decline in neuropsych scores

4

7%

1

25%

Care Related Concerns

112

63%

26

23%

Anxiety/Depression

35

31%

6

17%

Caregiver burden

32

29%

5

16%

Access to resources

22

20%

9

41%

Family conflict

12

11%

5

42%

Abuse/Neglect

6

5%

0

0%

Suicidal thoughts *

5

4%

1

20%

Other/Unknown

11

6%

3

27%

NOTE: Multiple concerns can be selected per request, resulting in more concern areas than accepted requests.

Psychosocial Outcomes by Concern Areas

N

%

Research Related Concerns

56

100%

Retention concern

38

21%

Case Still In Progress

1

3%

Historic Case, Outcome not Logged

28

74%

Connected to SW services

1

3%

Continuation

2

5%

Provided counseling

3

8%

Unknown

3

8%

Brain donation

14

8%

Case Still In Progress

1

7%

Historic Case, Outcome not Logged

13

93%

Decline in neuropsych scores

4

2%

Connected to SW services

1

25%

Continuation

1

25%

Provided counseling

2

50%

N

%

Care Related Concerns

131

100%

Caregiver burden

32

18%

Case Still In Progress

2

5%

Historic Case, Outcome not Logged

11

28%

Provided counseling

10

26%

Referred to clinic for MD follow-up

3

8%

Referred to clinic for social work follow-up

6

15%

Referred to community resources

5

13%

Unknown

1

3%

Connected to SW services

1

100%

Anxiety/Depression

35

20%

Case Still In Progress

1

3%

Historic Case, Outcome not Logged

16

44%

Provided counseling

3

8%

Referred to clinic for MD follow-up

1

3%

Referred to clinic for social work follow-up

6

17%

Referred to community resources

4

11%

Unknown

2

6%

Connected to clinical care

2

6%

Continuation

1

100%

Access to resources

22

12%

Case Still In Progress

1

4%

Historic Case, Outcome not Logged

6

22%

Provided counseling

5

19%

Referred to clinic for MD follow-up

1

4%

Referred to clinic for social work follow-up

5

19%

Referred to community resources

6

22%

Unknown

2

7%

connected to community resources

1

4%

Family conflict

12

7%

Historic Case, Outcome not Logged

6

38%

Provided counseling

3

19%

Referred to clinic for MD follow-up

1

6%

Referred to clinic for social work follow-up

4

25%

Referred to community resources

2

12%

Abuse/Neglect

6

3%

Case Still In Progress

1

12%

Historic Case, Outcome not Logged

1

12%

Provided counseling

3

38%

Referred to clinic for MD follow-up

1

12%

Referred to clinic for social work follow-up

1

12%

Referred to community resources

1

12%

Suicidal thoughts *

5

3%

Historic Case, Outcome not Logged

3

60%

Referred to clinic for social work follow-up

2

40%

Column

Summary of Discontinuation

Retention Summary

Total

URG

N

%

N

%

Total Accepted Requests

129

100%

34

26%

Retained

108

84%

26

24%

Discontinued

21

16%

8

38%

Discontinuation Summary

Total

URG

N

%

N

%

Total Concern Areas

24

100%

9

38%

Retention concern

16

67%

5

31%

Anxiety

2

8%

1

50%

Access to resources

1

4%

1

100%

Brain donation

1

4%

0

0%

Caregiver burden

1

4%

1

100%

Decline in neuropsych scores

1

4%

0

0%

Other

1

4%

1

100%

Unknown

1

4%

0

0%

Summary of Discontinued because of Retention Concerns

Total

URG

N

%

N

%

Total Reasons for Retention Concern

19

100%

6

32%

Reduced interest in study activity

4

21%

1

25%

Reduced availability

1

5%

0

0%

Reduced interest in research participation

7

37%

4

57%

Unknown

7

37%

1

14%