Reporting Period (RP) = 2024-02-01 to 2025-01-31 Grant Start Date = 2021-08-15

Clinical Core Progress Report Prose:
453 participants were active in the P30 for part or all of the reporting period (02/01/2024- 01/31/2025), 21% from HRD (mostly African American). Of active participants, 37 participants newly enrolled, 11 from HRD. We followed 290 participants with the UDS, 128 remotely with T-Cog and/or phone call visits. Since 71% of the active cohort comes from outside of Chicago, if only considering participants from Chicago (N=131) 40% are from HRD. Approximately 69% of the cohort has been followed for at least 5 years while 24% have been followed for more than 10 years, 19% of those from HRD. Brain donation pre-commitment is 79% of the sample, with an additional 15% considering. Of HRDs, 74% are agreed with an additional 20% considering. There were 32 Core deaths in the period of report (21 pre-committed) and 21 completed brain autopsies (14% from HRD). Of the 11 not captured, 7 had pre-committed but changed their decision at the time of death.

HRD Numbers for Table E2:
Number of HRD participants enrolled in Center registry / total number in registry: 1093/7627 (14%)

Number of HRD participants consented to autopsy / total consented to autopsy 71/357 (20%)

1 Reporting Period Overview

Active participant status as of the end of the reporting period

		Total		HRD
		N	%	N	%
Total Active this RP		453	100%	96	21%
	Active at RP End	407	90%	90	20%
	Deceased	32	7%	4	<1%
	Discontinued	14	3%	2	<1%

Further breakdown of active participants as of the end of the reporting period

				Total		HRD
				N	%	N	%
Total Active in RP				453	100%	96	21%
	Participated this RP			290	64%	63	22%
		Enrolled this RP		34	12%	9	26%
			Active at RP End	34	100%	9	26%
		Not enrolled this RP		256	88%	54	21%
			Active at RP End	247	96%	53	21%
			Deceased	8	3%	1	12%
			Discontinued	1	<1%	0	0%
	Did not participate this RP			163	36%	33	20%
		Enrolled this RP		3	2%	2	67%
			Active at RP End	1	33%	1	100%
			Deceased	2	67%	1	50%
		Not enrolled this RP		160	98%	31	19%
			Active at RP End	125	78%	27	22%
			Deceased	22	14%	2	9%
			Discontinued	13	8%	2	15%

2 Active Participants

2.1 New Enrollment during this RP

2.1.1 Enrolled This RP

		Total		HRD			Non-HRD
		N	%	N	%	% of HRD	N	%	% of Non-HRD
Total Enrolled this RP		37	100%	11	30%	100%	26	70%	100%
	Recruited Year 4	9	24%	3	33%	27%	6	67%	23%
	Recruited Year 3	19	51%	5	26%	45%	14	74%	54%
	Recruited Year 2	7	19%	2	29%	18%	5	71%	19%
	Recruited Year 1	2	5%	1	50%	9%	1	50%	4%

2.1.2 Demographics of Enrolled this RP

		Total		HRD		Non-HRD
		N	%	N	%	N	%
Total Enrolled this RP		37	100%	11	30%	26	70%
	White, non-hispanic	26	70%	0	0%	26	100%
	Black or African American	7	19%	7	100%	0	0%
	Asian	2	5%	2	100%	0	0%
	Hispanic	2	5%	2	100%	0	0%

2.1.3 Diagnosis of Enrolled this RP

		Total		HRD		Non-HRD
		N	%	N	%	N	%
Total Enrolled this RP		37	100%	11	30%	26	70%
	Dementia	23	62%	8	35%	15	65%
	Normal Control	10	27%	2	20%	8	80%
	Mild Cognitive Impairment	4	11%	1	25%	3	75%

2.1.4 Recruitment Source of Enrolled this RP

		Total		HRD			Non-HRD
		N	%	N	%	% of HRD	N	%	% of Non-HRD
Total Enrolled this RP		37	100%	11	30%	100%	26	70%	100%
	NM Clinician	19	51%	7	37%	64%	12	63%	46%
	Word of Mouth	6	16%	2	33%	18%	4	67%	15%
	Internet	5	14%	1	20%	9%	4	80%	15%
	Non-NM Clinician	4	11%	1	25%	9%	3	75%	12%
	Event	1	3%	0	0%	0%	1	100%	4%
	Media Coverage	1	3%	0	0%	0%	1	100%	4%
	Social Media	1	3%	0	0%	0%	1	100%	4%

2.1.5 Recruitment Source by Diagnosis of Enrolled this RP

			Total		HRD
			N	%	N	%
Total Enrolled this RP			37	100%	11	30%
	Dementia		23	62%	8	35%
		NM Clinician	15	65%	6	40%
		Word of Mouth	1	4%	1	100%
		Non-NM Clinician	3	13%	1	33%
		Internet	2	9%	0	0%
		Event	1	4%	0	0%
		Social Media	1	4%	0	0%
	Normal Control		10	27%	2	20%
		Word of Mouth	5	50%	1	20%
		Non-NM Clinician	1	10%	0	0%
		Internet	3	30%	1	33%
		Media Coverage	1	10%	0	0%
	Mild Cognitive Impairment		4	11%	1	25%
		NM Clinician	4	100%	1	25%

2.2 Participation and Rentention

2.2.1 Active Participants

Number of active participants in the clinical core as of the 2024-02-01.

		Total		HRD		Non-HRD
		N	%	N	%	N	%
Total Active this RP		453	100%	96	21%	357	79%

2.2.2 Participation During RP

Participation of active participants during this reporting period by HRD status:

		Total		HRD			Non-HRD
		N	%	N	%	% of HRD	N	%	% of Non-HRD
Total Active this RP		453	100%	96	21%	100%	357	79%	100%
	Participated	290	64%	63	22%	66%	227	78%	64%
	Did Not Participate	163	36%	33	20%	34%	130	80%	36%

Total visits completed during this reporting period by visit type and HRD status:

		Total		HRD			Non-HRD
		N	%	N	%	% of HRD	N	%	% of Non-HRD
Visits this RP		291	100%	63	22%	100%	228	78%	100%
	In-person	163	56%	35	21%	56%	128	79%	56%
	Virtual	128	44%	28	22%	44%	100	78%	44%

Virtual visit participation by whether the visit was completed over the phone or via video chat and whether a telephone cognitive battery (tcog) was completed or whether the virtual visit was informant only.

			Total		HRD			Non-HRD
			N	%	N	%	% of HRD	N	%	% of Non-HRD
Remote Visits this RP			128	100%	28	22%	100%	100	78%	100%
	Telephone		117	91%	23	20%	82%	94	80%	94%
		Informant Only	101	86%	17	17%	74%	84	83%	89%
		T-cog	16	14%	6	38%	26%	10	62%	11%
	Video		5	4%	2	40%	7%	3	60%	3%
		Informant Only	3	60%	1	33%	50%	2	67%	67%
		T-cog	2	40%	1	50%	50%	1	50%	33%
	Phone and Video		6	5%	3	50%	11%	3	50%	3%
		Informant Only	1	17%	0	0%	0%	1	100%	33%
		T-cog	5	83%	3	60%	100%	2	40%	67%

2.2.3 Participation Since Grant Start

Participation of active participants since the start of the grant by HRD status:

		Total		HRD			Non-HRD
		N	%	N	%	% of HRD	N	%	% of Non-HRD
Total Active Since Grant Start		590	100%	128	22%	100%	462	78%	100%
	Participated this RP	290	49%	63	22%	49%	227	78%	49%
	Did Not Participate this RP	300	51%	65	22%	51%	235	78%	51%

2.2.4 Contact Attempts

Active participants contacted during reporting period

		Total		HRD		Non-HRD
		N	%	N	%	N	%
Total Active this RP		453	100%	96	21%	357	79%
	Contacted	365	81%	79	22%	286	78%
	Not contacted	88	19%	17	19%	71	81%

2.2.5 SW Calls to PCOs during RP

Social Work Calls are made to “phone call only” participants (PCOs) during the reporting period. There were 302 visits in which a potential 6 month follow-up call fell within the reporting period. Visits are only eligible for a Social Work call if the participant is “phone call only” and agreed or considering to brain donation. 238 visits were not eligible for a Social Work call, 36 were completed, 9 are still in progress and 19 were deemed no longer pursuing. 13 of those no longer pursuing are because of an internal decision and 6 were due to a difficult to reach participant.

		Total		HRD		Non-HRD
		N	%	N	%	N	%
Total Visits 6 Months		302	100%	54	18%	248	82%
	Successfully talked to participant, no further action needed	36	12%	4	11%	32	89%
	Pursuing for Social Work PCO	9	3%	2	22%	7	78%
	No longer pursuing participant for call	19	6%	5	26%	14	74%
	Social Work PCO Call Not Needed	238	79%	43	18%	195	82%

PCO Retention Retention for participants that recieved a PCO call this RP

		Total		HRD
		N	%	N	%
Total PCO Calls this RP		36	100%	4	NA%
	2-5 years of participation	6	17%	0	0%
	5-10 years of participation	17	47%	2	12%
	10+ years of participation	13	36%	2	15%

2.2.6 Retention

Active participant retention for all active participants by location

			Total		HRD		Non-HRD
			N	%	N	%	N	%
Total			1,000	100%	246	25%	754	75%
	Total Active		453	45%	96	21%	357	79%
		10+ years of participation	108	24%	21	19%	87	81%
		5-10 years of participation	203	45%	42	21%	161	79%
		2-5 years of participation	80	18%	17	21%	63	79%
		<2 years of participation	62	14%	16	26%	46	74%
	Total active in Cook or Collar counties		314	31%	78	25%	236	75%
		10+ years of participation	83	26%	17	20%	66	80%
		5-10 years of participation	141	45%	35	25%	106	75%
		2-5 years of participation	52	17%	15	29%	37	71%
		<2 years of participation	38	12%	11	29%	27	71%
	Total active in Cook county		233	23%	72	31%	161	69%
		10+ years of participation	59	25%	16	27%	43	73%
		5-10 years of participation	107	46%	31	29%	76	71%
		2-5 years of participation	37	16%	14	38%	23	62%
		<2 years of participation	30	13%	11	37%	19	63%

2.3 Diagnosis

2.3.1 Diagnosis by HRD Status

Diagnosis of active participants by HRD Status

		Total		HRD			Non-HRD
		N	%	N	%	% of HRD	N	%	% of Non-HRD
Total Active this RP		453	100%	96	21%	100%	357	79%	100%
	Cognitively Normal Control	233	51%	50	21%	52%	183	79%	51%
	Primary Progressive Aphasia	95	21%	10	11%	10%	85	89%	24%
	Dementia of the AD type	56	12%	15	27%	16%	41	73%	11%
	Mild Cognitive Impairment	29	6%	10	34%	10%	19	66%	5%
	Frontotemporal Dementia	23	5%	5	22%	5%	18	78%	5%
	Other Dementia	17	4%	6	35%	6%	11	65%	3%

2.3.2 Diagnosis by CDR Score

Diagnosis of active participants by CDR Score

	Global CDR Score
Diagnosis	0.0 = No impairment	0.5 = Questionable impariment	1.0 = Mild impairment	2.0 = Moderate impairment	3.0 = Severe impairment	CDR Pending	Total	% HRD
Cognitively Normal Control	166	11	1	0	0	55	233	21.46%
Primary Progressive Aphasia	8	19	13	10	20	25	95	10.53%
Dementia of the AD type	0	2	14	15	18	7	56	26.79%
Mild Cognitive Impairment	1	18	0	0	0	10	29	34.48%
Frontotemporal Dementia	1	5	6	4	6	1	23	21.74%
Other Dementia	1	6	4	0	5	1	17	35.29%
Total	177	61	38	29	49	99	453	21.19%

2.4 Demographics

2.4.1 Sex and Race/Ethnicity

			Total		HRD		Non-HRD
			N	%	N	%	N	%
Total Active in RP			453	100%	96	21%	357	79%
	Female		260	57%	63	24%	197	76%
		White, non-hispanic	202	78%	5	2%	197	98%
		Black or African American	43	17%	43	100%	0	0%
		Asian	7	3%	7	100%	0	0%
		Hispanic	7	3%	7	100%	0	0%
		More than one race	1	<1%	1	100%	0	0%
	Male		193	43%	33	17%	160	83%
		White, non-hispanic	169	88%	9	5%	160	95%
		Black or African American	13	7%	13	100%	0	0%
		Asian	6	3%	6	100%	0	0%
		Hispanic	5	3%	5	100%	0	0%

2.4.2 Race/Ethnicity Only

		Total		HRD		Non-HRD
		N	%	N	%	N	%
Total Active this RP		453	100%	96	21%	357	79%
	White, non-hispanic	371	82%	14	4%	357	96%
	Black or African American	56	12%	56	100%	0	0%
	Asian	13	3%	13	100%	0	0%
	Hispanic	12	3%	12	100%	0	0%
	More than one race	1	<1%	1	100%	0	0%

2.4.3 Location

			Total		HRD			Non-HRD
			N	%	N	%	% of HRD	N	%	% of Non-HRD
Total Active in RP			453	100%	96	21%	100%	357	79%	100%
	Within Chicago		131	29%	53	40%	55%	78	60%	22%
		Within Cook county	131	100%	53	40%	100%	78	60%	100%
	Outside of Chicago		322	71%	43	13%	45%	279	87%	78%
		Within Cook county	102	32%	19	19%	44%	83	81%	30%
		Within collar counties	81	25%	6	7%	14%	75	93%	27%
		Not within cook or collar counties	139	43%	18	13%	42%	121	87%	43%

2.4.4 Urban/Rural

Active Participants by urban or rural location and proximity to NU ADRC

			Total		HRD			Non-HRD
			N	%	N	%	% of HRD	N	%	% of Non-HRD
Total Active in RP			453	100%	96	21%	100%	357	79%	100%
	Rural		15	3%	15	100%	16%	0	0%	0%
		Within Cook county	3	20%	3	100%	20%	0	0%	0%
		Not within cook or collar counties	12	80%	12	100%	80%	0	0%	0%
	Urban		438	97%	81	18%	84%	357	82%	100%
		Within Cook county	230	53%	69	30%	85%	161	70%	45%
		Not within cook or collar counties	127	29%	6	5%	7%	121	95%	34%
		Within collar counties	81	18%	6	7%	7%	75	93%	21%

2.5 Biomarkers

2.5.1 Biomarker Scan Completion

At least 1 biomarker scan completed by diagnosis

	Total		Person with a diagnosis		Normal control
Scans	N	%	N	%	N	%
MRI Scan	376	83%	177	80.45%	199	85.41%
Amyloid PET Scan	187	41.28%	100	45.45%	87	37.34%
Tau PET Scan	144	31.79%	85	38.64%	59	25.32%
FDG-PET Scan	74	16.34%	59	26.82%	15	6.44%

2.5.2 Biomarker Scans This RP

Biomarker scans completed this reporting period by diagnosis

	Total		Person with a diagnosis		Normal control
Scans	N	%	N	%	N	%
MRI Scan	66	0.14569536	45	0.20454545	21	0.09012876
Tau PET Scan	25	0.05518764	16	0.07272727	9	0.03862661
Amyloid PET Scan	23	0.05077263	15	0.06818182	8	0.03433476
FDG-PET Scan	15	0.03311258	15	0.06818182	0	0.00000000

2.6 Blood Draws

2.6.1 Blood Draw and APOE Status

			Total		HRD		Non-HRD
			N	%	N	%	N	%
Total Active in RP			453	100%	96	21%	357	79%
	Participants with at least 1 blood draw		420	93%	83	20%	337	80%
		APOE captured	401	95%	81	20%	320	80%
		APOE not currently expected	9	2%	1	11%	8	89%
		APOE pending	10	2%	1	10%	9	90%
	Participants with no blood draw		33	7%	13	39%	20	61%
		APOE captured	11	33%	5	45%	6	55%
		APOE not currently expected	22	67%	8	36%	14	64%

2.6.2 Blood Draws within RP

		Total		HRD		Non-HRD
		N	%	N	%	N	%
Total Active in RP		453	100%	96	21%	357	79%
	Blood draw within RP	159	35%	39	25%	120	75%
	No blood draw within RP	294	65%	57	19%	237	81%

2.7 Brain Donation

2.7.1 Brain Donation

The brain donation status of everyone active since the start of the grant.

			Total		HRD			Non-HRD
			N	%	N	%	% of HRD	N	%	% of Non-HRD
Total Active in RP			453	100%	96	21%	100%	357	79%	100%
	Agreed or considering		423	93%	90	21%	94%	333	79%	93%
		Agreed to autopsy	357	79%	71	20%	79%	286	80%	86%
		Considering autopsy	66	15%	19	29%	21%	47	71%	14%
	Not agreed or unknown		30	7%	6	20%	6%	24	80%	7%
		Refused autopsy	30	7%	6	20%	100%	24	80%	100%

2.7.2 Brain Donation Cumulative

The brain donation status of everyone active since the start of the grant.

			Total		HRD		Non-HRD
			N	%	N	%	N	%
Total Active Since Grant Start			590	100%	128	22%	462	78%
	Agreed or considering		547	93%	118	22%	429	78%
		Agreed to autopsy	461	78%	93	20%	368	80%
		Considering autopsy	86	15%	25	29%	61	71%
	Not agreed or unknown		43	7%	10	23%	33	77%
		Refused autopsy	43	7%	10	23%	33	77%

3 Recruitment

3.1 Recruited this RP

3.1.1 Recruitment Method

The recruitment method of each individual added to the ADRC registry during the reporting period. Interested individuals either complete the online registry survey, express interest at an event or directly contact a study team member through email or phone.

		Total		HRD		Non-HRD		Unknown
		N	%	N	%	N	%	N	%
Total Recruited in RP		670	100%	155	23%	409	61%	106	100%
	Online Survey	531	79%	67	13%	366	69%	98	18%
	Event	104	16%	86	83%	10	10%	8	8%
	Direct Contact	35	5%	2	6%	33	94%	0	0%

3.1.2 Recruitment Source

The recruitment source of each individual added to the ADRC registry during the reporting period.

		Total		HRD		Non-HRD		Unknown
		N	%	N	%	N	%	N	%
Total Recruited in RP		670	100%	155	23%	409	61%	106	100%
	Internet	138	21%	17	12%	120	87%	1	<1%
	NM Clinician	106	16%	18	17%	63	59%	25	24%
	Event	102	15%	86	84%	8	8%	8	8%
	Unknown	98	15%	14	14%	42	43%	42	43%
	Media Coverage	69	10%	4	6%	60	87%	5	7%
	Word of Mouth	41	6%	4	10%	35	85%	2	5%
	Non-NM Clinician	35	5%	4	11%	31	89%	0	0%
	Clinical Trials Referral	33	5%	1	3%	9	27%	23	70%
	Email Blast/E-newsletter	21	3%	2	10%	19	90%	0	0%
	Social Media	16	2%	2	12%	14	88%	0	0%
	Flyer	7	1%	2	29%	5	71%	0	0%
	Support Group	4	<1%	1	25%	3	75%	0	0%

3.1.3 Recruitment Status

The recruitment status of the individuals that were added to the ADRC registry during the reporting period. The below status span across all ADRC affiliated, co-enrolled studies. For example, if a participant was co-enrolled into the Clinical Core Study and the SuperAging Study, but was determined ineligible for PPA and Clinical Trials, the overall clinical core and affiliated studies status would be “Enrolled”, because the participant enrolled into at least one affiliated study and co-enrolled into Clinical Core.

		Total		HRD		Non-HRD		Unknown
		N	%	N	%	N	%	N	%
Total Recruited in RP		670	100%	155	23%	409	61%	106	100%
	Enrolled	24	4%	5	21%	14	58%	5	21%
	Eligible	3	<1%	2	67%	1	33%	0	0%
	Potentially Eligible	309	46%	106	34%	155	50%	48	16%
	Ineligible	268	40%	26	10%	211	79%	31	12%
	Not Interested	42	6%	4	10%	27	64%	11	26%
	Unknown/Not Evaluated	24	4%	12	50%	1	4%	11	46%

3.1.4 Cumulative Recruitment

Cumulative Enrollment into the Recruitment Registry since the start of the grant.

		Total		HRD		Non-HRD		Unknown
		N	%	N	%	N	%	N	%
Total Recruited in RP		3,445	100%	531	15%	1,815	53%	1,099	100%
	Online Survey	2,383	69%	284	12%	1,526	64%	573	24%
	Historic Import	715	21%	27	4%	190	27%	498	70%
	Event	263	8%	210	80%	25	10%	28	11%
	Direct Contact	84	2%	10	12%	74	88%	0	0%

3.1.5 Historic ORE Core Import

		Total		HRD		Non-HRD		Unknown
		N	%	N	%	N	%	N	%
Total Recruited in RP		1,385	100%	182	13%	599	43%	604	100%
	Historic Import	715	52%	27	4%	190	27%	498	70%
	Online Survey	531	38%	67	13%	366	69%	98	18%
	Event	104	8%	86	83%	10	10%	8	8%
	Direct Contact	35	3%	2	6%	33	94%	0	0%

4 Co-Enrollments

4.1 Co-Enrolled Studies

4.1.1 Current Co-Enrollments

Currently active clinical core participants that are also currently active in affiliated studies by HRD status (N Active = 453)

		Total			HRD		Non-HRD
		N	% of Active	%	N	%	N	%
Total		402	89%	100%	69	17%	333	83%
	PPA	234	52%	58%	28	12%	206	88%
	NUSAP	120	26%	30%	22	18%	98	82%
	ADNI-3	20	4%	5%	11	55%	9	45%
	ALLFTD	11	2%	3%	1	9%	10	91%
	ADNI-4	7	2%	2%	6	86%	1	14%
	AHEAD 3-45	5	1%	1%	0	0%	5	100%
	Buddy Program	3	<1%	<1%	0	0%	3	100%
	APEX	1	<1%	<1%	1	100%	0	0%
	LEADS	1	<1%	<1%	0	0%	1	100%

NUSAP includes all participants that signed a NUSAP, RO1, or U19 consent form. Out of the 210 participants that have ever signed one of these consent forms, 120 were active in the reporting period in core.

4.1.2 Ever Co-Enrolled

Currently active clinical core participants that have ever co-enrolled in an affiliated study by HRD status (N Active = 453)

		Total			HRD		Non-HRD
		N	% of Active	%	N	%	N	%
Total		581	128%	100%	97	17%	484	83%
	PPA	272	60%	47%	32	12%	240	88%
	NUSAP	120	26%	21%	22	18%	98	82%
	ARMADA	51	11%	9%	10	20%	41	80%
	CB2	35	8%	6%	2	6%	33	94%
	ADNI-3	20	4%	3%	11	55%	9	45%
	ALLFTD	19	4%	3%	3	16%	16	84%
	CB1	13	3%	2%	1	8%	12	92%
	LEADS	8	2%	1%	2	25%	6	75%
	LEARN	8	2%	1%	1	12%	7	88%
	ADNI-4	7	2%	1%	6	86%	1	14%
	Viva-Mind	7	2%	1%	3	43%	4	57%
	A4	6	1%	1%	0	0%	6	100%
	AHEAD 3-45	5	1%	<1%	0	0%	5	100%
	Buddy Program	4	<1%	<1%	1	25%	3	75%
	APEX	2	<1%	<1%	2	100%	0	0%
	Veri-T	2	<1%	<1%	0	0%	2	100%
	MIND/NIC	1	<1%	<1%	1	100%	0	0%
	T2 Protect	1	<1%	<1%	0	0%	1	100%

4.1.3 Co-Enrollments Since Grant Start

Participants enrolled in the grant period that were ever enrolled in an affiliated study by HRD status.

		Total		HRD		Non-HRD
		N	%	N	%	N	%
Total		724	100%	120	17%	604	83%
	PPA	350	48%	44	13%	306	87%
	NUSAP	143	20%	26	18%	117	82%
	ARMADA	63	9%	12	19%	51	81%
	CB2	41	6%	2	5%	39	95%
	CB1	23	3%	1	4%	22	96%
	ALLFTD	22	3%	5	23%	17	77%
	ADNI-3	21	3%	11	52%	10	48%
	LEADS	16	2%	5	31%	11	69%
	LEARN	9	1%	1	11%	8	89%
	ADNI-4	7	<1%	6	86%	1	14%
	Viva-Mind	7	<1%	3	43%	4	57%
	A4	6	<1%	0	0%	6	100%
	AHEAD 3-45	5	<1%	0	0%	5	100%
	Buddy Program	4	<1%	1	25%	3	75%
	APEX	2	<1%	2	100%	0	0%
	T2 Protect	2	<1%	0	0%	2	100%
	Veri-T	2	<1%	0	0%	2	100%
	MIND/NIC	1	<1%	1	100%	0	0%

4.1.4 FTLD Co-Enrollments

Active participants ever enrolled in the FTLD module:

		Total		HRD			Non-HRD
		N	%	N	%	% of HRD	N	%	% of Non-HRD
Total Active in RP		453	100%	96	21%	100%	357	79%	100%
	Enrolled	29	6%	7	24%	7%	22	76%	6%
	Not Enrolled	424	94%	89	21%	93%	335	79%	94%

4.1.5 SuperAging Ever Co-Enrolled by Diagnosis

Participants Active in Clinical Core during this reporting period and ever enrolled in the SuperAging RO1 or U19 by Diagnosis

		Enrolled in SuperAging	Not Enrolled in SuperAging	Total
Total Active this RP		120	333	453
	Dementia of the AD type	4	52	56
	Mild Cognitive Impairment	5	24	29
	Frontotemporal Dementia	0	23	23
	Cognitively Normal Control	108	125	233
	Primary Progressive Aphasia	0	95	95
	Other Dementia	3	14	17

All NUSAP participants (Any participation in any Northwestern SuperAging Program) by type of SuperAging participation and clinical core participation status

		NUSAP Enrolled Only	SA & NUSAP Enrolled	SA Enrolled Only	Total
Total NU SuperAging Participants		5	73	132	210
	Active in RP	5	73	42	120
	Deceased	0	0	68	68
	Discontinued	0	0	19	19
	Not Enrolled in Core	0	0	3	3

There are 13 participants that were active in the clinical core during this reporting period that have since died or discontinued.

5 Deceased Participants

5.1 Neuropathology

5.1.1 Deaths & Autopsies

			Total		HRD		Non-HRD
			N	%	N	%	N	%
Total Deaths in RP			32	100%	4	12%	28	88%
	Autopsy Completed		21	66%	3	14%	18	86%
		Agreed to autopsy	21	100%	3	14%	18	86%
	No Autopsy Expected		11	34%	1	9%	10	91%
		Agreed to autopsy	7	64%	0	0%	7	100%
		Considering autopsy	3	27%	1	33%	2	67%
		Refused autopsy	1	9%	0	0%	1	100%

5.1.2 Neuropath Forms

		Total		HRD		Non-HRD
		N	%	N	%	N	%
Total Autopsies in RP		21	100%	3	14%	18	86%
	NP forms completed	18	86%	3	17%	15	83%
	NP forms not completed	3	14%	0	0%	3	100%

5.1.3 Deaths since the start of the grant:

			Total		HRD		Non-HRD
			N	%	N	%	N	%
Total Deaths Since Grant Start			133	100%	22	17%	111	83%
	Autopsy Completed		101	76%	15	15%	86	85%
		Agreed to autopsy	100	99%	15	15%	85	85%
		Considering autopsy	1	<1%	0	0%	1	100%
	No Autopsy Expected		32	24%	7	22%	25	78%
		Agreed to autopsy	15	47%	3	20%	12	80%
		Considering autopsy	10	31%	4	40%	6	60%
		Refused autopsy	7	22%	0	0%	7	100%

6 NACC Packet Submissions

6.1 NACC Packets/Forms

			Uploaded this RP	2024-02-01	2025-01-31
Total Packets			476	9,870	10,346
	Initial UDS		37	1,427	1,464
		Initial (Telephone + In-person)	37	1,427	1,464
	Follow-up UDS		303	5,681	5,984
		In-person Follow-up	143	3,459	3,602
		Telephone Follow-up	160	2,222	2,382
	FLTD Module		14	205	219
		FTLD Initial	4	127	131
		FTLD Follow-up	10	78	88
	Other		122	2,557	2,679
		Milestone	80	1,867	1,947
		Neuropath data form	42	430	472

6.2 Initial Packet Diagnoses

The breakdown of diagnoses of Demented, MCI, Impaired Not MCI, or Normal Control as of the initial UDS visit.

		N	%
Total Initial Packets		1,464	100%
	Cognitively Normal Controls	516	35%
	Dementia	781	53%
	Impaired, not MCI	7	<1%
	MCI	160	11%

7 Psychosocial Pathway

7.1 Psychosocial Pathway Numbers

7.1.1 Referrals by Status and Duration

		Total			HRD
		N	% of Total	Ave. Effort (min)	N	%
Total Referrals		25	100%	56.00	6	24%
	Accepted	3	12%	45.50	2	67%
	Completed	16	64%	67.12	3	19%
	Denied	6	24%		1	17%

7.1.2 Referrals by Status, Risk Flag and Duration

			N	% of Total	Ave. Effort (min)
Total Referrals			25	100%	54.4
	Accepted		3	12%	45.5
		No Risk Flag	3	12%	45.5
	Completed		16	64%	58.9
		No Risk Flag	12	48%	75.3
		Risk Flag	4	16%	42.5
	Denied		6	24%	0.0
		No Risk Flag	6	24%	0.0

7.1.3 Referrals Participant Type

		N	% of Total	Ave. Effort (min)
Total**		34	100%	59.00
	Care/Study Partner	17	50%	55.36
	Participant	17	50%	61.75

**Requests may be counted twice if the participant and study partner were involved

7.1.4 Referrals by Area

		N	% of Total	Ave. Effort (min)
Total**		35	100%	54.00
	Abuse *	2	6%	57.50
	Access to resources	4	11%	68.67
	Anxiety	1	3%	30.00
	Caregiver burden	12	34%	75.00
	Depression	8	23%	48.25
	Family conflict	4	11%	83.75
	Retention concern	2	6%	45.00
	Suicidal thoughts *	2	6%	27.50

**Requests may be counted multiple times if multiple areas of concern are selected

7.1.5 Refferals by Discontinuations

Since 2021:
All participants that engaged in the Psychosocial Pathway since 2021 by their discontinuation status.

		Total		HRD
		N	%	N	%
Total PSP Requests since 2021		105	100%	26	NA%
	Discontinued	22	21%	7	32%
	Not Discontinued	83	79%	19	23%

This RP:
All participants that engaged in the Psychosocial Pathway over the reporting period by their discontinuation status.

		Total		HRD
		N	%	N	%
Total PSP Requests This RP		25	100%	6	NA%
	Discontinued	2	8%	0	0%
	Not Discontinued	23	92%	6	26%

7.1.6 Discontinuations

2020-Present All discontinuations from the ADRC study 2020-Present categorized by year

		N
Discontinued Per Year		86
	2020	25
	2021	19
	2022	17
	2023	11
	2024	14

Mean Change in Discontinuation from 2020-present: -11%

Discontinuations over the Reporting Period All discontinuations from the ADRC study over the current reporting period by whether participant had psychosocial/retention pathway and their Diagnosis.

			Total		HRD
			N	%	N	%
Total Discontinuations this RP			14	100%	2	14%
	Retention Pathway		5	36%	0	0%
		Dementia	1	20%	0	0%
		Mild Cognitive Impairment	1	20%	0	0%
		Normal Control	3	60%	0	0%
	No Retention Pathway		9	64%	2	22%
		Dementia	2	22%	0	0%
		Normal Control	7	78%	2	29%

8 Data Management

8.1 Data Requests

Number of data requests completed or in-progress during the reporting period by type of data request

		N	% of Total
Total Requests		140	NA%
	Data Pulls for Publication	28	NA%
	Data Pulls for Internal Tracking	58	NA%
	Database Management	30	NA%
	Reports/Visualizations	9	NA%
	Data Quality Checks	15	NA%

8.2 Data Request Type and Effort Breakdown:

Breakdown of the number of data requests completed or in-progress by the data management during the reporting period by data request type and the effort spent on each type of request.

9 Resource Sharing

9.1 Resource Sharing

9.1.2 Resource Sharing Automated Survey Completion

Number of projects for which resources were shared or approved to be shared during the reporting period.

		pr_send	pr_comp	N
Total Requests				114
	Not an internal Mesulam Center Study	Survey Sent to Project Owener	Completed Survey	66
	Not an internal Mesulam Center Study	Survey Sent to Project Owener	Incomplete Survey	17
	Not an internal Mesulam Center Study	Survey Not Sent		14
	Internal Mesulam Center Study	Survey Not Sent		17

			N	n_completed_survey	n_incomplete_survey	n_NA
Total Active Projects in RP			114	66	17	31
	Not an internal Mesulam Center Study		97	66	17	14
		Survey Sent to Project Owener	83	66	17	0
		Survey Not Sent	14	0	0	14
	Internal Mesulam Center Study		17	0	0	17
		Survey Not Sent	17	0	0	17

______

9.1.3 Resource Sharing Automated Survey Results