Grant Period (GP) = 2021-07-01 to 2025-05-31 Grant Start Date = 2021-07-01

Clinical Core Progress Report Prose:
611 participants were active in the P30 for part or all of the grant period (07/01/2021- 05/31/2025), 22% from HRD (mostly African American). Of active participants, 147 participants newly enrolled, 43 from HRD. We collected UDS visit packets, 650 of which were remote T-Cog and/or phone call visits. Since 70% (N= 428) of the active cohort comes from outside of Chicago, if only considering participants from Chicago (N=183) 43% are from HRD. Approximately 73% of the cohort has been followed for at least 5 years while 30% have been followed for more than 10 years, 23% of those from HRD. Brain donation pre-commitment is 78% of the sample, with an additional 14% considering. Of HRDs, 72% are agreed with an additional 20% considering. There were 156 Core deaths in the period of report (120 pre-committed) and 121 completed brain autopsies (15% from HRD). Of the 35 not captured, 16 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: 1194/7831 (15%)

Number of HRD participants consented to autopsy / total consented to autopsy 98/476 (21%)

1 Grant Period Overview

Active participant status as of the end of the grant period

		Total		HRD
		N	%	N	%
Total Active this GP		611	100%	137	22%
	Active at GP End	401	66%	94	15%
	Deceased	156	26%	25	4%
	Discontinued	54	9%	18	3%

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

				Total		HRD
				N	%	N	%
Total Active in GP				611	100%	137	22%
	Participated this GP			540	88%	120	22%
		Enrolled this GP		141	26%	41	29%
			Active at GP End	121	86%	35	29%
			Deceased	9	6%	2	22%
			Discontinued	11	8%	4	36%
		Not enrolled this GP		399	74%	79	20%
			Active at GP End	269	67%	58	22%
			Deceased	117	29%	17	15%
			Discontinued	13	3%	4	31%
	Did not participate this GP			71	12%	17	24%
		Enrolled this GP		6	8%	2	33%
			Active at GP End	3	50%	0	0%
			Deceased	2	33%	1	50%
			Discontinued	1	17%	1	100%
		Not enrolled this GP		65	92%	15	23%
			Active at GP End	8	12%	1	12%
			Deceased	28	43%	5	18%
			Discontinued	29	45%	9	31%

2 Active Participants

2.1 New Enrollment during this GP

2.1.1 Enrolled This GP

		Total		HRD			Non-HRD
		N	%	N	%	% of HRD	N	%	% of Non-HRD
Total Enrolled this GP		147	100%	43	29%	100%	104	71%	100%
	Recruited Year 4	19	13%	8	42%	19%	11	58%	11%
	Recruited Year 3	34	23%	9	26%	21%	25	74%	24%
	Recruited Year 2	25	17%	9	36%	21%	16	64%	15%
	Recruited Year 1	46	31%	15	33%	35%	31	67%	30%
	Recruited Before Grant Start	23	16%	2	9%	5%	21	91%	20%

2.1.2 Demographics of Enrolled this GP

		Total		HRD		Non-HRD
		N	%	N	%	N	%
Total Enrolled this GP		147	100%	43	29%	104	71%
	White, non-hispanic	111	76%	7	6%	104	94%
	Black or African American	22	15%	22	100%	0	0%
	Hispanic	8	5%	8	100%	0	0%
	Asian	6	4%	6	100%	0	0%

2.1.3 Diagnosis of Enrolled this GP

		Total		HRD		Non-HRD
		N	%	N	%	N	%
Total Enrolled this GP		147	100%	43	29%	104	71%
	Dementia	93	63%	20	22%	73	78%
	Normal Control	42	29%	15	36%	27	64%
	Mild Cognitive Impairment	12	8%	8	67%	4	33%

2.1.4 Recruitment Source of Enrolled this GP

		Total		HRD			Non-HRD
		N	%	N	%	% of HRD	N	%	% of Non-HRD
Total Enrolled this GP		147	100%	43	29%	100%	104	71%	100%
	NM Clinician	61	41%	16	26%	37%	45	74%	43%
	Internet	29	20%	11	38%	26%	18	62%	17%
	Non-NM Clinician	18	12%	3	17%	7%	15	83%	14%
	Word of Mouth	16	11%	3	19%	7%	13	81%	12%
	Event	10	7%	7	70%	16%	3	30%	3%
	Media Coverage	9	6%	3	33%	7%	6	67%	6%
	Support Group	3	2%	0	0%	0%	3	100%	3%
	Social Media	1	<1%	0	0%	0%	1	100%	<1%

2.1.5 Recruitment Source by Diagnosis of Enrolled this GP

			Total		HRD
			N	%	N	%
Total Enrolled this GP			147	100%	43	29%
	Dementia		93	63%	20	22%
		NM Clinician	51	55%	14	27%
		Internet	16	17%	1	6%
		Non-NM Clinician	15	16%	2	13%
		Word of Mouth	6	6%	3	50%
		Event	2	2%	0	0%
		Support Group	2	2%	0	0%
		Social Media	1	1%	0	0%
	Normal Control		42	29%	15	36%
		NM Clinician	5	12%	1	20%
		Internet	7	17%	4	57%
		Non-NM Clinician	3	7%	1	33%
		Word of Mouth	10	24%	0	0%
		Media Coverage	9	21%	3	33%
		Event	7	17%	6	86%
		Support Group	1	2%	0	0%
	Mild Cognitive Impairment		12	8%	8	67%
		NM Clinician	5	42%	1	20%
		Internet	6	50%	6	100%
		Event	1	8%	1	100%

2.2 Participation and Rentention

2.2.1 Active Participants

Number of active participants in the clinical core as of the 2021-07-01.

		Total		HRD		Non-HRD
		N	%	N	%	N	%
Total Active this GP		611	100%	137	22%	474	78%

2.2.2 Participation During GP

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

		Total		HRD			Non-HRD
		N	%	N	%	% of HRD	N	%	% of Non-HRD
Total Active this GP		611	100%	137	22%	100%	474	78%	100%
	Participated	540	88%	120	22%	88%	420	78%	89%
	Did Not Participate	71	12%	17	24%	12%	54	76%	11%

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

		Total		HRD			Non-HRD
		N	%	N	%	% of HRD	N	%	% of Non-HRD
Visits this GP		1,431	100%	288	20%	100%	1,143	80%	100%
	In-person	781	55%	162	21%	56%	619	79%	54%
	Virtual	650	45%	126	19%	44%	524	81%	46%

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 GP			650	100%	126	19%	100%	524	81%	100%
	Telephone		606	93%	112	18%	89%	494	82%	94%
		Informant Only	392	65%	66	17%	59%	326	83%	66%
		T-cog	214	35%	46	21%	41%	168	79%	34%
	Video		29	4%	9	31%	7%	20	69%	4%
		Informant Only	2	7%	1	50%	11%	1	50%	5%
		T-cog	27	93%	8	30%	89%	19	70%	95%
	Phone and Video		15	2%	5	33%	4%	10	67%	2%
		Informant Only	6	40%	2	33%	40%	4	67%	40%
		T-cog	9	60%	3	33%	60%	6	67%	60%

2.2.3 Contact Attempts

Active participants contacted during grant period

		Total		HRD		Non-HRD
		N	%	N	%	N	%
Total Active this GP		611	100%	137	22%	474	78%
	Contacted	589	96%	130	22%	459	78%
	Not contacted	22	4%	7	32%	15	68%

2.2.4 SW Calls to PCOs during GP

Social Work Calls are made to “phone call only” participants (PCOs) during the grant period. There were 1455 visits in which a potential 6 month follow-up call fell within the grant period. Visits are only eligible for a Social Work call if the participant is “phone call only” and agreed or considering to brain donation. 621 visits were not eligible for a Social Work call, 87 were completed, 2 are still in progress and 80 were deemed no longer pursuing. 67 of those no longer pursuing are because of an internal decision and 13 were due to a difficult to reach participant.

		Total		HRD		Non-HRD
		N	%	N	%	N	%
Total Visits 6 Months		1,455	100%	279	19%	1,176	81%
	Successfully talked to participant, no further action needed	87	6%	8	9%	79	91%
	Pursuing for Social Work PCO	2	<1%	1	50%	1	50%
	No longer pursuing participant for call	80	5%	16	20%	64	80%
	Social Work PCO Call Not Needed	621	43%	128	21%	493	79%
	Visit Happened Before PCO Tracking	665	46%	126	19%	539	81%

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

		Total		HRD
		N	%	N	%
Total PCO Calls this GP		87	100%	8	9%
	2-5 years of participation	11	13%	0	0%
	5-10 years of participation	45	52%	4	9%
	10+ years of participation	31	36%	4	13%

2.2.5 Retention

Active participant retention for all active participants by location

			Total		HRD		Non-HRD
			N	%	N	%	N	%
Total			1,346	100%	354	26%	992	74%
	Total Active		611	45%	137	22%	474	78%
		10+ years of participation	182	30%	42	23%	140	77%
		5-10 years of participation	266	44%	50	19%	216	81%
		2-5 years of participation	92	15%	23	25%	69	75%
		<2 years of participation	71	12%	22	31%	49	69%
	Total active in Cook or Collar counties		422	31%	113	27%	309	73%
		10+ years of participation	139	33%	34	24%	105	76%
		5-10 years of participation	181	43%	42	23%	139	77%
		2-5 years of participation	57	14%	20	35%	37	65%
		<2 years of participation	45	11%	17	38%	28	62%
	Total active in Cook county		313	23%	104	33%	209	67%
		10+ years of participation	100	32%	30	30%	70	70%
		5-10 years of participation	137	44%	39	28%	98	72%
		2-5 years of participation	40	13%	18	45%	22	55%
		<2 years of participation	36	12%	17	47%	19	53%

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 GP		611	100%	137	22%	100%	474	78%	100%
	Cognitively Normal Control	274	45%	67	24%	49%	207	76%	44%
	Primary Progressive Aphasia	138	23%	16	12%	12%	122	88%	26%
	Dementia of the AD type	83	14%	25	30%	18%	58	70%	12%
	Mild Cognitive Impairment	43	7%	13	30%	9%	30	70%	6%
	Frontotemporal Dementia	40	7%	8	20%	6%	32	80%	7%
	Other Dementia	33	5%	8	24%	6%	25	76%	5%

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	235	21	0	0	0	18	274	24.45%
Primary Progressive Aphasia	12	28	15	18	47	18	138	11.59%
Dementia of the AD type	1	3	18	18	36	7	83	30.12%
Mild Cognitive Impairment	2	32	3	2	1	3	43	30.23%
Frontotemporal Dementia	1	6	7	6	19	1	40	20%
Other Dementia	1	10	5	5	10	2	33	24.24%
Total	252	100	48	49	113	49	611	22.42%

2.4 Demographics

2.4.1 Sex and Race/Ethnicity

			Total		HRD		Non-HRD
			N	%	N	%	N	%
Total Active in GP			611	100%	137	22%	474	78%
	Female		344	56%	90	26%	254	74%
		White, non-hispanic	262	76%	8	3%	254	97%
		Black or African American	60	17%	60	100%	0	0%
		Hispanic	11	3%	11	100%	0	0%
		Asian	9	3%	9	100%	0	0%
		More than one race	1	<1%	1	100%	0	0%
		Other	1	<1%	1	100%	0	0%
	Male		267	44%	47	18%	220	82%
		White, non-hispanic	233	87%	13	6%	220	94%
		Black or African American	18	7%	18	100%	0	0%
		Hispanic	8	3%	8	100%	0	0%
		Asian	7	3%	7	100%	0	0%
		Other	1	<1%	1	100%	0	0%

2.4.2 Race/Ethnicity Only

		Total		HRD		Non-HRD
		N	%	N	%	N	%
Total Active this GP		611	100%	137	22%	474	78%
	White, non-hispanic	495	81%	21	4%	474	96%
	Black or African American	78	13%	78	100%	0	0%
	Hispanic	19	3%	19	100%	0	0%
	Asian	16	3%	16	100%	0	0%
	Other	2	<1%	2	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 GP			611	100%	137	22%	100%	474	78%	100%
	Within Chicago		183	30%	79	43%	58%	104	57%	22%
		Within Cook county	183	100%	79	43%	100%	104	57%	100%
	Outside of Chicago		428	70%	58	14%	42%	370	86%	78%
		Within Cook county	130	30%	25	19%	43%	105	81%	28%
		Within collar counties	109	25%	9	8%	16%	100	92%	27%
		Not within cook or collar counties	189	44%	24	13%	41%	165	87%	45%

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 GP			611	100%	137	22%	100%	474	78%	100%
	Rural		23	4%	22	96%	16%	1	4%	<1%
		Within Cook county	4	17%	4	100%	18%	0	0%	0%
		Within collar counties	1	4%	1	100%	5%	0	0%	0%
		Not within cook or collar counties	18	78%	17	94%	77%	1	6%	100%
	Urban		588	96%	115	20%	84%	473	80%	100%
		Within Cook county	309	53%	100	32%	87%	209	68%	44%
		Within collar counties	108	18%	8	7%	7%	100	93%	21%
		Not within cook or collar counties	171	29%	7	4%	6%	164	96%	35%

2.5 Blood Draws

2.5.1 Blood Draw and APOE Status

			Total		HRD		Non-HRD
			N	%	N	%	N	%
Total Active in GP			611	100%	137	22%	474	78%
	Participants with at least 1 blood draw		546	89%	116	21%	430	79%
		APOE captured	503	92%	98	19%	405	81%
		APOE not currently expected	43	8%	18	42%	25	58%
	Participants with no blood draw		65	11%	21	32%	44	68%
		APOE captured	9	14%	2	22%	7	78%
		APOE not currently expected	56	86%	19	34%	37	66%

2.5.2 Blood Draws within GP

		Total		HRD		Non-HRD
		N	%	N	%	N	%
Total Active in GP		611	100%	137	22%	474	78%
	Blood draw within GP	302	49%	70	23%	232	77%
	No blood draw within GP	309	51%	67	22%	242	78%

2.6 Brain Donation

2.6.1 Brain Donation

The brain donation status of everyone active this GP.

			Total		HRD			Non-HRD
			N	%	N	%	% of HRD	N	%	% of Non-HRD
Total Active in GP			611	100%	137	22%	100%	474	78%	100%
	Agreed or considering		563	92%	125	22%	91%	438	78%	92%
		Agreed to autopsy	476	78%	98	21%	78%	378	79%	86%
		Considering autopsy	87	14%	27	31%	22%	60	69%	14%
	Not agreed or unknown		48	8%	12	25%	9%	36	75%	8%
		Refused autopsy	48	8%	12	25%	100%	36	75%	100%

3 Recruitment

3.1 Recruited this GP

3.1.1 Recruitment Method

The recruitment method of each individual added to the ADRC registry during the grant 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 GP		3,026	100%	596	20%	1,757	58%	673	100%
	Online Survey	2,697	89%	328	12%	1,726	64%	643	24%
	Event	329	11%	268	81%	31	9%	30	9%

3.1.2 Recruitment Source

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

		Total		HRD		Non-HRD		Unknown
		N	%	N	%	N	%	N	%
Total Recruited in GP		3,026	100%	596	20%	1,757	58%	673	100%
	Internet	682	23%	102	15%	434	64%	146	21%
	Media Coverage	544	18%	63	12%	443	81%	38	7%
	Unknown	520	17%	46	9%	200	38%	274	53%
	NM Clinician	333	11%	45	14%	211	63%	77	23%
	Event	320	11%	263	82%	27	8%	30	9%
	Other (specify)	206	7%	36	17%	134	65%	36	17%
	Word of Mouth	157	5%	19	12%	121	77%	17	11%
	Non-NM Clinician	125	4%	12	10%	94	75%	19	15%
	Clinical Trials Referral	48	2%	1	2%	12	25%	35	73%
	Social Media	30	<1%	3	10%	27	90%	0	0%
	Email Blast/E-newsletter	28	<1%	2	7%	26	93%	0	0%
	Support Group	18	<1%	2	11%	16	89%	0	0%
	Flyer	15	<1%	2	13%	12	80%	1	7%

3.1.3 Recruitment Status

The recruitment status of the individuals that were added to the ADRC registry during the grant 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 GP		3,026	100%	596	20%	1,757	58%	673	100%
	Enrolled	171	6%	37	22%	123	72%	11	6%
	Eligible	5	<1%	0	0%	4	80%	1	20%
	Potentially Eligible	1,324	44%	310	23%	721	54%	293	22%
	Ineligible	1,188	39%	197	17%	760	64%	231	19%
	Not Interested	313	10%	48	15%	148	47%	117	37%
	Unknown/Not Evaluated	25	<1%	4	16%	1	4%	20	80%

3.1.4 Historic ORE Core Import

		Total		HRD		Non-HRD		Unknown
		N	%	N	%	N	%	N	%
Total Recruited in GP		3,741	100%	623	17%	1,947	52%	1,171	100%
	Online Survey	2,697	72%	328	12%	1,726	64%	643	24%
	Historic Import	715	19%	27	4%	190	27%	498	70%
	Event	329	9%	268	81%	31	9%	30	9%

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 = 611)

		Total			HRD		Non-HRD
		N	% of Active	%	N	%	N	%
Total		429	70%	100%	78	18%	351	82%
	PPA	230	38%	54%	28	12%	202	88%
	NUSAP	144	24%	34%	26	18%	118	82%
	ADNI-3	20	3%	5%	11	55%	9	45%
	ALLFTD	12	2%	3%	1	8%	11	92%
	ADNI-4	11	2%	3%	10	91%	1	9%
	AHEAD 3-45	5	<1%	1%	0	0%	5	100%
	Buddy Program	3	<1%	<1%	0	0%	3	100%
	APEX	2	<1%	<1%	2	100%	0	0%
	LEADS	1	<1%	<1%	0	0%	1	100%
	Veri-T	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, 144 were active in the grant 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 = 611)

		Total			HRD		Non-HRD
		N	% of Active	%	N	%	N	%
Total		744	122%	100%	127	17%	617	83%
	PPA	362	59%	49%	46	13%	316	87%
	NUSAP	144	24%	19%	26	18%	118	82%
	ARMADA	63	10%	8%	12	19%	51	81%
	CB2	41	7%	6%	2	5%	39	95%
	ALLFTD	23	4%	3%	5	22%	18	78%
	CB1	23	4%	3%	1	4%	22	96%
	ADNI-3	21	3%	3%	11	52%	10	48%
	LEADS	16	3%	2%	5	31%	11	69%
	ADNI-4	11	2%	1%	10	91%	1	9%
	LEARN	9	1%	1%	1	11%	8	89%
	Viva-Mind	7	1%	<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	3	<1%	<1%	3	100%	0	0%
	Veri-T	3	<1%	<1%	0	0%	3	100%
	T2 Protect	2	<1%	<1%	0	0%	2	100%
	MIND/NIC	1	<1%	<1%	1	100%	0	0%

4.1.3 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 GP		611	100%	137	22%	100%	474	78%	100%
	Enrolled	44	7%	12	27%	9%	32	73%	7%
	Not Enrolled	567	93%	125	22%	91%	442	78%	93%

4.1.4 SuperAging Ever Co-Enrolled by Diagnosis

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

		Enrolled in SuperAging	Not Enrolled in SuperAging	Total
Total Active this GP		144	467	611
	Dementia of the AD type	6	77	83
	Mild Cognitive Impairment	8	35	43
	Frontotemporal Dementia	0	40	40
	Cognitively Normal Control	127	147	274
	Primary Progressive Aphasia	0	138	138
	Other Dementia	3	30	33

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 GP	5	73	66	144
	Deceased	0	0	48	48
	Discontinued	0	0	15	15
	Not Enrolled in Core	0	0	3	3

There are 40 participants that were active in the clinical core during this grant 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 GP			156	100%	25	16%	131	84%
	Autopsy Completed		121	78%	18	15%	103	85%
		Agreed to autopsy	120	99%	18	15%	102	85%
		Considering autopsy	1	<1%	0	0%	1	100%
	No Autopsy Expected		35	22%	7	20%	28	80%
		Agreed to autopsy	16	46%	3	19%	13	81%
		Considering autopsy	10	29%	4	40%	6	60%
		Refused autopsy	9	26%	0	0%	9	100%

5.1.2 Autopsies by APOE Status

			Total		HRD		Non-HRD
			N	%	N	%	N	%
Total Autopsies in GP			156	100%	25	16%	131	84%
	Autopsy Completed		121	78%	18	15%	103	85%
		APOE captured	101	83%	12	12%	89	88%
		APOE not currently expected	20	17%	6	30%	14	70%
	No Autopsy Expected		35	22%	7	20%	28	80%
		APOE captured	30	86%	7	23%	23	77%
		APOE not currently expected	5	14%	0	0%	5	100%

5.1.3 Neuropath Forms

		Total		HRD		Non-HRD
		N	%	N	%	N	%
Total Autopsies in GP		121	100%	18	15%	103	85%
	NP forms completed	116	96%	16	14%	100	86%
	NP forms not completed	5	4%	2	40%	3	60%

5.1.4 Location of Autopsies

		Total		HRD		Non-HRD
		N	%	N	%	N	%
Total Autopsies in GP		121	100%	18	15%	103	85%
	Local	71	59%	10	14%	61	86%
	Non-Local	49	40%	8	16%	41	84%
	Unknown	1	<1%	0	0%	1	100%

6 NACC Packet Submissions

6.1 NACC Packets/Forms

			N	2021-07-01	2025-05-31
Total Packets			2,316	8,136	10,452
	Initial UDS		148	1,326	1,474
		Initial (Telephone + In-person)	148	1,326	1,474
	Follow-up UDS		1,461	4,590	6,051
		In-person Follow-up	849	2,795	3,644
		Telephone Follow-up	612	1,795	2,407
	FLTD Module		60	161	221
		FTLD Initial	28	104	132
		FTLD Follow-up	32	57	89
	Other		647	2,059	2,706
		Milestone	347	1,627	1,974
		COVID Survey Forms	163	97	260
		Neuropath data form	137	335	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		1,474	100%
	Cognitively Normal Controls	518	35%
	Dementia	787	53%
	Impaired, not MCI	7	<1%
	MCI	162	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		95	100%	72.00	22	23%
	Accepted	1	1%		1	50%
	Completed	75	79%	58.84	18	24%
	Denied	17	18%	15.83	3	19%
	In progress	2	2%	140.00		NA%

7.1.2 Referrals by Status, Risk Flag and Duration

			N	% of Total	Ave. Effort (min)
Total Referrals			95	100%	68.0
	Accepted		1	1%	0.0
		No Risk Flag	1	1%	0.0
	Completed		75	79%	58.0
		No Risk Flag	69	73%	59.0
		Risk Flag	6	6%	57.0
	Denied		17	18%	15.8
		No Risk Flag	16	17%	15.8
		Risk Flag	1	1%	0.0
	In progress		2	2%	140.0
		No Risk Flag	1	1%	0.0
		Risk Flag	1	1%	140.0

7.1.3 Referrals Participant Type

		N	% of Total	Ave. Effort (min)
Total**		138	100%	49.00
	Care/Study Partner	51	37%	63.26
	Other	2	1%	30.00
	Participant	85	62%	53.30

**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**		125	100%	69.00
	Abuse *	3	2%	85.00
	Access to resources	15	12%	92.33
	Anxiety	6	5%	82.17
	Brain donation	7	6%	95.20
	Caregiver burden	19	15%	69.25
	Decline in neuropsych scores	3	2%	85.00
	Depression	21	17%	45.63
	Family conflict	9	7%	58.33
	Other	8	6%	52.71
	Retention concern	29	23%	43.52
	Suicidal thoughts *	5	4%	45.00

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

7.1.5 Refferals by Discontinuations

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

		Total		HRD
		N	%	N	%
Total PSP Requests This GP		95	100%	22	23%
	Discontinued	21	22%	7	33%
	Not Discontinued	74	78%	15	20%

7.1.6 Discontinuations

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

		N
Discontinued Per Year		85
	2020	25
	2021	18
	2022	17
	2023	11
	2024	14

Mean Change in Discontinuation from 2020-present: -10%

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

			Total		HRD
			N	%	N	%
Total Discontinuations this GP			54	100%	18	33%
	Retention Pathway		21	39%	7	33%
		Dementia	8	38%	2	25%
		Mild Cognitive Impairment	2	10%	0	0%
		Normal Control	11	52%	5	45%
	No Retention Pathway		33	61%	11	33%
		Dementia	9	27%	1	11%
		Mild Cognitive Impairment	2	6%	0	0%
		Normal Control	22	67%	10	45%

8 Data Management

8.1 Data Requests

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

		N	% of Total	Percent Duration	Average Duration	Max Duration
Total Requests		451	100%	100%	14.00	470.00
	Data Pulls for Publication	69	15%	11%	8.21	124.97
	Data Pulls for Internal Tracking	187	41%	23%	6.43	100.57
	Database Management	104	23%	30%	14.86	469.75
	Reports/Visualizations	40	9%	23%	29.88	201.00
	Data Quality Checks	51	11%	13%	12.91	157.35

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 grant period by data request type and the effort spent on each type of request.

9 Progress Report Data Sets

The below data is stored in the Mesulam Center P30_RPPR SharePoint Folder. The sharing privileges for each file is restricted to “people with existing access” to the SharePoint site. Please reach out to deborah.zemlock@northwestern.edu for access questions.

Active Participants Data Set
Deceased Participants Data Set
Visit During GP Data Set
Data Dictionary for the above Data Sets
Cumulative Enrollment Demograpic Data Set

2025 ADRC Grant Renewal Numbers Report