Reporting Period (RP) = 2025-02-01 to 2026-06-30 Grant Start Date = 2021-08-15

Clinical Core Progress Report Prose:
472 participants were active in the P30 for part or all of the reporting period (02/01/2025- 06/30/2026), 25% from HRD (mostly African American). Of active participants, 62 participants newly enrolled, 26 from HRD. We followed 355 participants with the UDS, 162 remotely with T-Cog and/or phone call visits. Since 68% of the active cohort comes from outside of Chicago, if only considering participants from Chicago (N=149) 44% are from HRD. Approximately 63% of the cohort has been followed for at least 5 years while 27% have been followed for more than 10 years, 25% of those from HRD. Brain donation pre-commitment is 80% of the sample, with an additional 14% considering. Of HRDs, 74% are agreed with an additional 19% considering. There were 42 Core deaths in the period of report (34 pre-committed) and 35 completed brain autopsies (14% from HRD). Of the 7 not captured, 4 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: 1413/8857 (16%)

Number of HRD participants consented to autopsy / total consented to autopsy 86/377 (23%)

1 Reporting Period Overview

Active participant status as of the end of the reporting period

		Total		HRD
		N	%	N	%	% of HRD
Total Active this RP		472	100%	116	25%	100%
	Active at RP End	420	89%	105	25%	91%
	Deceased	45	10%	8	18%	7%
	Discontinued	7	1%	3	43%	3%

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

				Total		HRD
				N	%	N	%	% of HRD
Total Active in RP				472	100%	116	25%	100%
	Participated this RP			355	75%	91	26%	78%
		Enrolled this RP		56	16%	23	41%	25%
			Active at RP End	55	98%	22	40%	96%
			Discontinued	1	2%	1	100%	4%
		Not enrolled this RP		299	84%	68	23%	75%
			Active at RP End	279	93%	64	23%	94%
			Deceased	20	7%	4	20%	6%
	Did not participate this RP			117	25%	25	21%	22%
		Enrolled this RP		6	5%	3	50%	12%
			Active at RP End	5	83%	2	40%	67%
			Discontinued	1	17%	1	100%	33%
		Not enrolled this RP		111	95%	22	20%	88%
			Active at RP End	81	73%	17	21%	77%
			Deceased	25	23%	4	16%	18%
			Discontinued	5	5%	1	20%	5%

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		62	100%	26	42%	100%	36	58%	100%
	Recruited Year 5	32	52%	9	28%	35%	23	72%	64%
	Recruited Year 4	17	27%	9	53%	35%	8	47%	22%
	Recruited Year 3	5	8%	3	60%	12%	2	40%	6%
	Recruited Year 2	3	5%	2	67%	8%	1	33%	3%
	Recruited Year 1	3	5%	3	100%	12%	0	0%	0%
	Recruited Before Grant Start	2	3%	0	0%	0%	2	100%	6%

2.1.2 Demographics of Enrolled this RP

		Total		HRD			Non-HRD
		N	%	N	%	% of HRD	N	%	% of Non-HRD
Total Enrolled this RP		62	100%	26	42%	100%	36	58%	100%
	White, non-hispanic	38	61%	2	5%	8%	36	95%	100%
	Black or African American	16	26%	16	100%	62%	0	0%	0%
	Asian	4	6%	4	100%	15%	0	0%	0%
	Hispanic	4	6%	4	100%	15%	0	0%	0%

2.1.3 Diagnosis of Enrolled this RP

		Total		HRD			Non-HRD
		N	%	N	%	% of HRD	N	%	% of Non-HRD
Total Enrolled this RP		62	100%	26	42%	100%	36	58%	100%
	Dementia	31	50%	5	16%	19%	26	84%	72%
	Normal Control	26	42%	17	65%	65%	9	35%	25%
	Mild Cognitive Impairment	5	8%	4	80%	15%	1	20%	3%

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		62	100%	26	42%	100%	36	58%	100%
	NM Clinician	24	39%	7	29%	27%	17	71%	47%
	Event	9	15%	9	100%	35%	0	0%	0%
	Word of Mouth	9	15%	5	56%	19%	4	44%	11%
	Non-NM Clinician	8	13%	2	25%	8%	6	75%	17%
	Internet	7	11%	2	29%	8%	5	71%	14%
	Media Coverage	3	5%	0	0%	0%	3	100%	8%
	Clinical Trials Referral	2	3%	1	50%	4%	1	50%	3%

2.1.5 Recruitment Source by Diagnosis of Enrolled this RP

			Total		HRD
			N	%	N	%	% of HRD
Total Enrolled this RP			62	100%	26	42%	100%
	Dementia		31	50%	5	16%	19%
		NM Clinician	17	55%	3	18%	60%
		Non-NM Clinician	7	23%	1	14%	20%
		Internet	5	16%	0	0%	0%
		Clinical Trials Referral	1	3%	1	100%	20%
		Word of Mouth	1	3%	0	0%	0%
	Mild Cognitive Impairment		5	8%	4	80%	15%
		Event	2	40%	2	100%	50%
		NM Clinician	2	40%	1	50%	25%
		Word of Mouth	1	20%	1	100%	25%
	Normal Control		26	42%	17	65%	65%
		Event	7	27%	7	100%	41%
		Word of Mouth	7	27%	4	57%	24%
		NM Clinician	5	19%	3	60%	18%
		Media Coverage	3	12%	0	0%	0%
		Internet	2	8%	2	100%	12%
		Clinical Trials Referral	1	4%	0	0%	0%
		Non-NM Clinician	1	4%	1	100%	6%

2.2 Participation and Rentention

2.2.1 Active Participants

Number of participants ever active in the reporting period.

		Total	HRD		Non-HRD
		N	N	%	N	%
Total Active this RP		472	116	25%	356	75%

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		472	100%	116	25%	100%	356	75%	100%
	Participated	355	75%	91	26%	78%	264	74%	74%
	Did Not Participate	117	25%	25	21%	22%	92	79%	26%

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

		Total		HRD			Non-HRD
		N	%	N	%	% of Non-HRD	N	%	% of HRD
Visits this RP		437	100%	328	75%	100%	109	25%	100%
	In-person	275	63%	194	71%	59%	81	29%	74%
	Remote	160	37%	132	82%	40%	28	18%	26%
	Both In-Person & Remote	2	<1%	2	100%	<1%	0	0%	0%

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			160	100%	28	18%	100%	132	82%	100%
	Telephone		155	97%	27	17%	96%	128	83%	97%
		Informant Only	118	76%	21	18%	78%	97	82%	76%
		T-cog	37	24%	6	16%	22%	31	84%	24%
	Video		2	1%	0	0%	0%	2	100%	2%
		T-cog	2	100%	0	0%	0%	2	100%	100%

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		656	100%	154	23%	100%	502	77%	100%
	Participated	355	54%	91	26%	59%	264	74%	53%
	Did Not Participate	301	46%	63	21%	41%	238	79%	47%

2.2.4 Active Participant Recruitment

Recruitment of participants active during the reporting period.

		Total		HRD			Non-HRD
		N	%	N	%	% of HRD	N	%	% of Non-HRD
Total Active in RP		472	100%	116	25%	100%	356	75%	100%
	Screened this RP	34	7%	9	26%	8%	25	74%	7%
	Not screened this RP	438	93%	107	24%	92%	331	76%	93%

2.2.5 Contact Attempts

Active participants contacted during reporting period

		Total		HRD			Non-HRD
		N	%	N	%	% of HRD	N	%	% of Non-HRD
Total Active this RP		472	100%	116	25%	100%	356	75%	100%
	Contacted	457	97%	113	25%	97%	344	75%	97%
	Not contacted	15	3%	3	20%	3%	12	80%	3%

2.2.6 SW Calls to PCOs during RP

Social Work Calls made to “phone call only” participants (PCOs) during the reporting period. There were 488 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. 391 visits were not eligible for a Social Work call, 60 were completed, 12 are still in progress and 25 were deemed no longer pursuing. 23 of those no longer pursuing are because of an internal decision and 2 were due to a difficult to reach participant.

		Total		HRD			Non-HRD
		N	%	N	%	% of HRD	N	%	% of Non-HRD
Total Visits 6 Months		488	100%	115	24%	100%	373	76%	100%
	Successfully talked to participant, no further action needed	60	12%	11	18%	10%	49	82%	13%
	Pursuing for Social Work PCO	12	2%	2	17%	2%	10	83%	3%
	No longer pursuing participant for call	25	5%	5	20%	4%	20	80%	5%
	Social Work PCO Call Not Needed	391	80%	97	25%	84%	294	75%	79%

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

		Total		HRD			Non-HRD
		N	%	N	%	% of HRD	N	%	% of Non-HRD
Total PCO Calls this RP		60	100%	11	18%	100%	49	82%	100%
	2-5 years of participation	17	28%	2	12%	18%	15	88%	31%
	5-10 years of participation	23	38%	6	26%	55%	17	74%	35%

2.2.7 Retention

Active participant retention for all active participants by location

			Total		HRD			Non-HRD
			N	%	N	%	% of HRD	N	%	% of Non-HRD
Total			1,054	100%	304	29%	100%	750	71%	100%
	Total Active		472	45%	116	25%	38%	356	75%	47%
		10+ years of participation	128	27%	32	25%	28%	96	75%	27%
		5-10 years of participation	168	36%	33	20%	28%	135	80%	38%
		2-5 years of participation	94	20%	19	20%	16%	75	80%	21%
		<2 years of participation	82	17%	32	39%	28%	50	61%	14%
	Total active in Cook or Collar counties		330	31%	97	29%	32%	233	71%	31%
		10+ years of participation	95	29%	26	27%	27%	69	73%	30%
		5-10 years of participation	120	36%	26	22%	27%	94	78%	40%
		2-5 years of participation	54	16%	15	28%	15%	39	72%	17%
		<2 years of participation	61	18%	30	49%	31%	31	51%	13%
	Total active in Cook county		252	24%	91	36%	30%	161	64%	21%
		10+ years of participation	70	28%	24	34%	26%	46	66%	29%
		5-10 years of participation	92	37%	24	26%	26%	68	74%	42%
		2-5 years of participation	36	14%	14	39%	15%	22	61%	14%
		<2 years of participation	54	21%	29	54%	32%	25	46%	16%

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		472	100%	116	25%	100%	356	75%	100%
	Cognitively Normal Control	238	50%	63	26%	54%	175	74%	49%
	Impaired Not MCI	8	2%	4	50%	3%	4	50%	1%
	Mild Cognitive Impairment	35	7%	14	40%	12%	21	60%	6%
	Amnestic Multidomain Dementia	58	12%	16	28%	14%	42	72%	12%
	Frontotemporal Dementia	25	5%	6	24%	5%	19	76%	5%
	Primary Progressive Aphasia	100	21%	10	10%	9%	90	90%	25%
	Other Dementia	8	2%	3	38%	3%	5	62%	1%

2.3.2 Diagnosis by CDR Score

Diagnosis of active participants by CDR Score

	Global CDR Score
Diagnosis	0	0.5	1	2	3	CDR Pending	Total	% HRD
Cognitively Normal Control	223	10	0	0	0	5	238	26%
Impaired Not MCI	0	7	0	0	1	0	8	50%
Mild Cognitive Impairment	1	26	4	1	0	3	35	40%
Amnestic Multidomain Dementia	0	3	15	20	17	3	58	28%
Frontotemporal Dementia	1	3	8	6	4	3	25	24%
Primary Progressive Aphasia	16	23	13	18	26	4	100	10%
Other Dementia	0	2	4	0	2	0	8	38%
Total	241	74	44	45	50	18	472	25%

2.4 Demographics

2.4.1 Sex and Race/Ethnicity

			Total		HRD			Non-HRD
			N	%	N	%	% of HRD	N	%	% of Non-HRD
Total Active in RP			472	100%	116	25%	100%	356	75%	100%
	Female		277	59%	80	29%	69%	197	71%	55%
		White, non-hispanic	204	74%	7	3%	9%	197	97%	100%
		Black or African American	54	19%	54	100%	68%	0	0%	0%
		Asian	9	3%	9	100%	11%	0	0%	0%
		Hispanic	9	3%	9	100%	11%	0	0%	0%
		More than one race	1	<1%	1	100%	1%	0	0%	0%
	Male		195	41%	36	18%	31%	159	82%	45%
		White, non-hispanic	168	86%	9	5%	25%	159	95%	100%
		Black or African American	15	8%	15	100%	42%	0	0%	0%
		Asian	7	4%	7	100%	19%	0	0%	0%
		Hispanic	5	3%	5	100%	14%	0	0%	0%

2.4.2 Race/Ethnicity Only

		Total		HRD			Non-HRD
		N	%	N	%	% of HRD	N	%	% of Non-HRD
Total Active in RP		472	100%	116	25%	100%	356	75%	100%
	White, non-hispanic	372	79%	16	4%	14%	356	96%	100%
	Black or African American	69	15%	69	100%	59%	0	0%	0%
	Asian	16	3%	16	100%	14%	0	0%	0%
	Hispanic	14	3%	14	100%	12%	0	0%	0%
	More than one race	1	<1%	1	100%	<1%	0	0%	0%

2.4.3 Location

			Total		HRD			Non-HRD
			N	%	N	%	% of HRD	N	%	% of Non-HRD
Total Active in RP			472	100%	116	25%	100%	356	75%	100%
	Within Chicago		149	32%	65	44%	56%	84	56%	24%
	Outside of Chicago		323	68%	51	16%	44%	272	84%	76%
		Within Cook county	103	32%	26	25%	51%	77	75%	28%
		Within collar counties	78	24%	6	8%	12%	72	92%	26%
		Not within cook or collar counties	142	44%	19	13%	37%	123	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 RP			472	100%	116	25%	100%	356	75%	100%
	Rural		17	4%	17	100%	15%	0	0%	0%
		Within Cook county	4	24%	4	100%	24%	0	0%	0%
		Not within cook or collar counties	13	76%	13	100%	76%	0	0%	0%
	Urban		455	96%	99	22%	85%	356	78%	100%
		Within Cook county	248	55%	87	35%	88%	161	65%	45%
		Within collar counties	78	17%	6	8%	6%	72	92%	20%
		Not within cook or collar counties	129	28%	6	5%	6%	123	95%	35%

2.5 Biomarkers

2.5.1 Biomarker Participation

Breakdown of the participants active this RP with at least 1 imaging scan by modality, sequences and diagnosis

				Total		Person with a diagnosis		Normal control
				N	%	N	% of N	N	% of N
Total Active this RP				472	100%	234	50%	238	50%
	At Least 1 Scan Completed			409	87%	202	49%	207	51%
		MRI		393	96%	195	50%	198	50%
			Structural	393	100%	195	50%	198	50%
			Resting State	376	96%	181	48%	195	52%
			Diffusion	377	96%	186	49%	191	51%
			Flair	281	72%	116	41%	165	59%
			All Sequences	261	66%	98	38%	163	62%
		Amyloid PET		215	53%	115	53%	100	47%
		FDG PET		89	22%	73	82%	16	18%
		Tau PET		185	45%	103	56%	82	44%
	No Scans Completed			63	13%	32	51%	31	49%

2.5.2 PET Read Results by Participant

PET Read Results by Participants Active this RP, scan type, and diagnosis

			Total		Dementia		MCI		Normal control
			N	%	N	% of N	N	% of N	N	% of N
Total Active in RP1			472	100%	199	42%	35	7%	238	50%
	Positive PET Read		78	17%	65	83%	6	8%	7	9%
		Amyloid & Tau	50	64%	41	82%	4	8%	5	10%
		Amyloid	17	22%	13	76%	2	12%	2	12%
		Tau	11	14%	11	100%	0	0%	0	0%
	Negative PET Read		95	20%	44	46%	1	1%	50	53%
		Amyloid & Tau	55	58%	20	36%	1	2%	34	62%
		Amyloid	33	35%	21	64%	0	0%	12	36%
		Tau	7	7%	3	43%	0	0%	4	57%
	Borderline PET Read		1	<1%	1	100%	0	0%	0	0%
		Tau	1	100%	1	100%	0	0%	0	0%
	No PET Reads		298	63%	89	30%	28	9%	181	61%
		PET Scans without reads	86	29%	23	27%	10	12%	53	62%
		No PET Scans	212	71%	66	31%	18	8%	128	60%
1This table reports PET read results for participants active during the reporting period. Participants that have had PET scans without a corresponding read (Amyloid, Tau, or FDG) are grouped under “PET Scans without Reads.” Participants in all categories may also have MRI scans available.

2.5.3 Total Scan Completion

Biomarker scans completed by the imaging core by modality, sequences and diagnosis for participants active over this RP.

			Total		Person with a diagnosis		Normal control
			N	%	N	% of N	N	% of N
Total Scans for Active Participants this RP			1,596	100%	834	52%	762	48%
	MRI		951	60%	443	47%	508	53%
		Structural	949	100%	442	47%	507	53%
		Resting State	868	91%	391	45%	477	55%
		Diffusion	873	92%	402	46%	471	54%
		Flair	581	61%	191	33%	390	67%
		All Sequences	533	56%	156	29%	377	71%
	Amyloid PET		274	17%	135	49%	139	51%
	Tau PET		260	16%	162	62%	98	38%
	FDG PET		111	7%	94	85%	17	15%

2.5.4 Scan Completion This RP

Biomarker scans completed this reporting period by modality, sequences, and diagnosis

			Total		Person with a diagnosis		Normal control
			N	%	N	% of N	N	% of N
Total Scans for Active Participants this RP			255	100%	152	60%	103	40%
	MRI		98	38%	57	58%	41	42%
		Structural	98	100%	57	58%	41	42%
		Resting State	93	95%	53	57%	40	43%
		Diffusion	87	89%	46	53%	41	47%
		Flair	89	91%	48	54%	41	46%
		All Sequences	78	80%	38	49%	40	51%
	Amyloid PET		65	25%	34	52%	31	48%
	Tau PET		62	24%	32	52%	30	48%
	FDG PET		30	12%	29	97%	1	3%

2.5.5 PET Read Results by Scans

Read results of amyloid and tau scans for active participants by diagnosis.

			Total		Person with a diagnosis		Normal control
			N	%	N	% of N	N	% of N
Total Amyloid and/or PET scans			400	100%	218	55%	182	46%
	Amyloid PET		215	54%	115	53%	100	47%
		Positive	61	28%	54	89%	7	11%
		Negative	94	44%	48	51%	46	49%
		No Reads	60	28%	13	22%	47	78%
	Tau PET		185	46%	103	56%	82	44%
		Positive	53	29%	53	100%	0	0%
		Negative	69	37%	27	39%	42	61%
		No Reads	61	33%	22	36%	39	64%

2.6 Blood Draws

2.6.1 Blood Draw and APOE Status

			Total		HRD			Non-HRD
			N	%	N	%	% of HRD	N	%	% of Non-HRD
Total Active in RP			472	100%	116	25%	100%	356	75%	100%
	Participants with at least 1 blood draw		449	95%	104	23%	90%	345	77%	97%
		APOE captured	430	96%	102	24%	98%	328	76%	95%
		APOE not currently expected	10	2%	1	10%	<1%	9	90%	3%
		APOE pending	9	2%	1	11%	<1%	8	89%	2%
	Participants with no blood draw		23	5%	12	52%	10%	11	48%	3%
		APOE captured	8	35%	5	62%	42%	3	38%	27%
		APOE not currently expected	15	65%	7	47%	58%	8	53%	73%

2.6.2 Blood Draws within RP

		Total		HRD			Non-HRD
		N	%	N	%	% of HRD	N	%	% of Non-HRD
Total Active in RP		472	100%	116	25%	100%	356	75%	100%
	Blood draw within RP	218	46%	61	28%	53%	157	72%	44%
	No blood draw within RP	254	54%	55	22%	47%	199	78%	56%

2.7 Brain Donation

2.7.1 Brain Donation

			Total		HRD			Non-HRD
			N	%	N	%	% of HRD	N	%	% of Non-HRD
Total Active in RP			472	100%	116	25%	100%	356	75%	100%
	Agreed or considering		441	93%	108	24%	93%	333	76%	94%
		Agreed to autopsy	377	85%	86	23%	80%	291	77%	87%
		Considering autopsy	64	15%	22	34%	20%	42	66%	13%
	Not agreed or unknown		31	7%	8	26%	7%	23	74%	6%
		Autopsy intent unknown	2	6%	2	100%	25%	0	0%	0%
		Refused autopsy	29	94%	6	21%	75%	23	79%	100%

2.7.2 Brain Donation Cumulative

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

			Total		HRD			Non-HRD
			N	%	N	%	% of HRD	N	%	% of Non-HRD
Total Active in Grant Period			656	100%	154	23%	100%	502	77%	100%
	Agreed or considering		606	92%	141	23%	92%	465	77%	93%
		Agreed to autopsy	514	85%	111	22%	79%	403	78%	87%
		Considering autopsy	92	15%	30	33%	21%	62	67%	13%
	Not agreed or unknown		50	8%	13	26%	8%	37	74%	7%
		Autopsy intent unknown	2	4%	2	100%	15%	0	0%	0%
		Refused autopsy	48	96%	11	23%	85%	37	77%	100%

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	%	% of Non-HRD	N	%	% of HRD	N	%	% of URG
Total Recruited in RP		1,191	100%	820	69%	100%	299	25%	100%	72	6%	100%
	Online Survey	995	84%	811	82%	99%	118	12%	39%	66	7%	92%
	Event	196	16%	9	5%	1%	181	92%	61%	6	3%	8%

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	%	% of HRD	N	%	% of Non-HRD	N	%	% of URG
Total Recruited in RP		1,191	100%	299	25%	100%	820	69%	100%	72	6%	100%
	NM Clinician	384	32%	43	11%	14%	322	84%	39%	19	5%	26%
	Internet	231	19%	27	12%	9%	201	87%	25%	3	1%	4%
	Event	192	16%	177	92%	59%	9	5%	1%	6	3%	8%
	Media Coverage	106	9%	12	11%	4%	92	87%	11%	2	2%	3%
	Unknown	92	8%	14	15%	5%	37	40%	5%	41	45%	57%
	Word of Mouth	64	5%	7	11%	2%	56	88%	7%	1	2%	1%
	Non-NM Clinician	62	5%	6	10%	2%	56	90%	7%	0	0%	0%
	Social Media	40	3%	7	18%	2%	33	82%	4%	0	0%	0%
	Email Blast/E-newsletter	12	1%	4	33%	1%	8	67%	<1%	0	0%	0%
	Support Group	5	<1%	0	0%	0%	5	100%	<1%	0	0%	0%
	Flyer	2	<1%	1	50%	<1%	1	50%	<1%	0	0%	0%
	Clinical Trials Referral	1	<1%	1	100%	<1%	0	0%	0%	0	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	%	% of Non-HRD	N	%	% of HRD	N	%	% of URG
Total Recruited in RP		1,191	100%	820	69%	100%	299	25%	100%	72	6%	100%
	Enrolled	53	4%	30	57%	4%	21	40%	7%	2	4%	3%
	Eligible	5	<1%	4	80%	<1%	1	20%	<1%	0	0%	0%
	Potentially Eligible	651	55%	404	62%	49%	193	30%	65%	54	8%	75%
	Ineligible	452	38%	362	80%	44%	75	17%	25%	15	3%	21%
	Not Interested	21	2%	18	86%	2%	3	14%	1%	0	0%	0%
	Not Yet Evaluated	9	<1%	2	22%	<1%	6	67%	2%	1	11%	1%

3.1.4 Cumulative Recruitment

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

		Total		HRD			Non-HRD			Unknown
		N	%	N	%	% of Non-HRD	N	%	% of HRD	N	%	% of URG
Total Recruited in Grant Period		4,630	100%	2,647	57%	100%	832	18%	100%	1,151	25%	100%
	Online Survey	3,452	75%	2,420	70%	91%	411	12%	49%	621	18%	54%
	Historic Import	715	15%	190	27%	7%	28	4%	3%	497	70%	43%
	Event	463	10%	37	8%	1%	393	85%	47%	33	7%	3%

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 = 472)

		Total		HRD			Non-HRD
		N	%	N	%	% of HRD	N	%	% of Non-HRD
Total		448	100%	95	21%	100%	353	79%	100%
	PPA	238	53%	26	11%	27%	212	89%	60%
	NUSAP	123	27%	27	22%	28%	96	78%	27%
	ADNI-4	24	5%	17	71%	18%	7	29%	2%
	ADNI-3	20	4%	11	55%	12%	9	45%	3%
	CLARITI	20	4%	8	40%	8%	12	60%	3%
	ALLFTD	12	3%	2	17%	2%	10	83%	3%
	AHEAD 3-45	5	1%	0	0%	0%	5	100%	1%
	APEX	2	<1%	2	100%	2%	0	0%	0%
	LEADS	2	<1%	1	50%	1%	1	50%	<1%
	Buddy Program	1	<1%	1	100%	1%	0	0%	0%
	Veri-T	1	<1%	0	0%	0%	1	100%	<1%

NUSAP includes all participants that signed a NUSAP, RO1, or U19 consent form. Out of the 228 participants that have ever signed one of these consent forms, 123 were active in the reporting period in core.

4.1.2 Ever Co-Enrolled for Active

Currently active clinical core participants that have ever co-enrolled in an affiliated study by HRD status (N Active = 472)

		Total		HRD			Non-HRD
		N	%	N	%	% of Non-HRD	N	%	% of HRD
Total		652	100%	519	80%	100%	133	20%	100%
	PPA	298	46%	262	88%	50%	36	12%	27%
	NUSAP	123	19%	96	78%	18%	27	22%	20%
	ARMADA	49	8%	39	80%	8%	10	20%	8%
	CB2	34	5%	32	94%	6%	2	6%	2%
	CLARITI	26	4%	14	54%	3%	12	46%	9%
	ADNI-4	25	4%	7	28%	1%	18	72%	14%
	ADNI-3	20	3%	9	45%	2%	11	55%	8%
	ALLFTD	20	3%	16	80%	3%	4	20%	3%
	CB1	9	1%	8	89%	2%	1	11%	<1%
	LEADS	8	1%	5	62%	<1%	3	38%	2%
	LEARN	8	1%	7	88%	1%	1	12%	<1%
	Viva-Mind	7	1%	4	57%	<1%	3	43%	2%
	A4	6	<1%	6	100%	1%	0	0%	0%
	Veri-T	6	<1%	5	83%	<1%	1	17%	<1%
	AHEAD 3-45	5	<1%	5	100%	<1%	0	0%	0%
	Buddy Program	4	<1%	3	75%	<1%	1	25%	<1%
	APEX	2	<1%	0	0%	0%	2	100%	2%
	MIND/NIC	1	<1%	0	0%	0%	1	100%	<1%
	T2 Protect	1	<1%	1	100%	<1%	0	0%	0%

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	%	% of Non-HRD	N	%	% of HRD
Total		832	100%	675	81%	100%	157	19%	100%
	PPA	388	47%	340	88%	50%	48	12%	31%
	NUSAP	161	19%	130	81%	19%	31	19%	20%
	ARMADA	63	8%	51	81%	8%	12	19%	8%
	CB2	41	5%	39	95%	6%	2	5%	1%
	CLARITI	26	3%	14	54%	2%	12	46%	8%
	ADNI-4	25	3%	7	28%	1%	18	72%	11%
	ALLFTD	24	3%	18	75%	3%	6	25%	4%
	CB1	23	3%	22	96%	3%	1	4%	<1%
	ADNI-3	21	3%	10	48%	1%	11	52%	7%
	LEADS	17	2%	11	65%	2%	6	35%	4%
	LEARN	9	1%	8	89%	1%	1	11%	<1%
	Viva-Mind	7	<1%	4	57%	<1%	3	43%	2%
	A4	6	<1%	6	100%	<1%	0	0%	0%
	Veri-T	6	<1%	5	83%	<1%	1	17%	<1%
	AHEAD 3-45	5	<1%	5	100%	<1%	0	0%	0%
	Buddy Program	4	<1%	3	75%	<1%	1	25%	<1%
	APEX	3	<1%	0	0%	0%	3	100%	2%
	T2 Protect	2	<1%	2	100%	<1%	0	0%	0%
	MIND/NIC	1	<1%	0	0%	0%	1	100%	<1%

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		472	100%	116	25%	100%	356	75%	100%
	Enrolled	27	6%	7	26%	6%	20	74%	6%
	Not Enrolled	445	94%	109	24%	94%	336	76%	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

		Total	Enrolled in SuperAging	Not Enrolled in SuperAging
Total Active in RP		472	123	349
	Amnestic Multidomain Dementia	58	3	55
	Mild Cognitive Impairment	35	8	27
	Frontotemporal Dementia	25	0	25
	Cognitively Normal Control	238	110	128
	Primary Progressive Aphasia	100	0	100
	Other Dementia	8	0	8

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

		Total	NUSAP Enrolled Only	SA & NUSAP Enrolled	SA Enrolled Only
Total NU SuperAging Participants		228	24	77	127
	Actively Followed	109	24	69	16
	Minimal Contact	3	0	0	3
	Deceased	86	0	6	80
	Discontinued	26	0	2	24
	Not Enrolled in Core	4	0	0	4

There are 11 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	%	% of HRD	N	%	% of Non-HRD
Total Deaths in RP			42	100%	7	17%	100%	35	83%	100%
	Autopsy Completed		35	83%	5	14%	71%	30	86%	86%
		Agreed to autopsy	34	97%	5	15%	100%	29	85%	97%
		Considering autopsy	1	3%	0	0%	0%	1	100%	3%
	No Autopsy Expected		7	17%	2	29%	29%	5	71%	14%
		Agreed to autopsy	4	57%	1	25%	50%	3	75%	60%
		Refused autopsy	3	43%	1	33%	50%	2	67%	40%

5.1.2 Neuropath Forms

		Total		HRD			Non-HRD
		N	%	N	%	% of HRD	N	%	% of Non-HRD
Total Autopsies in RP		35	100%	5	14%	100%	30	86%	100%
	NP forms completed	27	77%	4	15%	80%	23	85%	77%
	NP forms not completed	8	23%	1	12%	20%	7	88%	23%

5.1.3 Deaths since the start of the grant:

			Total		HRD			Non-HRD
			N	%	N	%	% of HRD	N	%	% of Non-HRD
Total Deaths in Grant Period			176	100%	29	16%	100%	147	84%	100%
	Autopsy Completed		136	77%	20	15%	69%	116	85%	79%
		Agreed to autopsy	134	99%	20	15%	100%	114	85%	98%
		Considering autopsy	2	1%	0	0%	0%	2	100%	2%
	No Autopsy Expected		40	23%	9	22%	31%	31	78%	21%
		Agreed to autopsy	19	48%	4	21%	44%	15	79%	48%
		Refused autopsy	11	28%	1	9%	11%	10	91%	32%
		Considering autopsy	10	25%	4	40%	44%	6	60%	19%

6 NACC Packet Submissions

6.1 NACC Packets/Forms

			Uploaded this RP	2025-02-01	2026-06-30
Total Packets			422	10,346	10,768
	Initial UDS		37	1,464	1,501
		Initial (Telephone + In-person)	37	1,464	1,501
	Follow-up UDS		266	5,984	6,250
		In-person Follow-up	205	3,602	3,807
		Telephone Follow-up	61	2,382	2,443
	FLTD Module		8	219	227
		FTLD Initial	2	131	133
		FTLD Follow-up	6	88	94
	Other		111	2,679	2,790
		Milestone	78	1,947	2,025
		Neuropath data form	33	472	505

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		1,501
	Cognitively Normal Controls	528
	Dementia	801
	Impaired, not MCI	7
	MCI	165

7 Psychosocial Pathway

7.1 Psychosocial Pathway Numbers

7.1.1 Referrals by Status and Duration

		Total			HRD			Non-HRD
		N	%	Ave. Effort (min)	N	%	% of HRD	N	%	% of Non-HRD
Total Requests in RP		35	100%		6	17%	100%	29	83%	100%
	Completed	25	71%	46.76	3	12%	50%	22	88%	76%
	Denied	6	17%		2	33%	33%	4	67%	14%
	In progress	3	9%	20.00	1	33%	17%	2	67%	7%
	Unknown	1	3%		0	0%	0%	1	100%	3%

7.1.2 Referrals by Status, Risk Flag and Duration

			Total			HRD			Non-HRD
			N	%	Ave. Effort (min)	N	%	% of HRD	N	%	% of Non-HRD
Total Requests in RP			35	100%		6	17%	100%	29	83%	100%
	Completed		25	71%	46.76	3	12%	50%	22	88%	76%
		No Risk Flag	22	88%	41.09	2	9%	67%	20	91%	91%
		Risk Flag	3	12%	88.33	1	33%	33%	2	67%	9%
	Denied		6	17%		2	33%	33%	4	67%	14%
		No Risk Flag	6	100%		2	33%	100%	4	67%	100%
	In progress		3	9%	20.00	1	33%	17%	2	67%	7%
		No Risk Flag	3	100%	20.00	1	33%	100%	2	67%	100%
	Unknown		1	3%		0	0%	0%	1	100%	3%
		No Risk Flag	1	100%		0	0%	0%	1	100%	100%

7.1.3 Referrals Participant Type

		Total			HRD			Non-HRD
		N	%	Ave. Effort (min)	N	%	% of HRD	N	%	% of Non-HRD
Total		45	100%		8	18%	100%	37	82%	100%
	Care/Study Partner	26	58%	48.50	5	19%	62%	21	81%	57%
	Participant	19	42%	42.71	3	16%	38%	16	84%	43%

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

7.1.4 Referrals by Area

		Total			HRD			Non-HRD
		N	%	Ave. Effort (min)	N	%	% of HRD	N	%	% of Non-HRD
Total		49	100%		8	16%	100%	41	84%	100%
	Abuse *	3	6%	88.33	1	33%	12%	2	67%	5%
	Access to resources	12	24%	31.27	2	17%	25%	10	83%	24%
	Brain donation	1	2%	10.00	1	100%	12%	0	0%	0%
	Caregiver burden	11	22%	49.50	3	27%	38%	8	73%	20%
	Decline in neuropsych scores	1	2%	15.00	0	0%	0%	1	100%	2%
	Depression	8	16%	46.88	0	0%	0%	8	100%	20%
	Family conflict	2	4%	47.50	0	0%	0%	2	100%	5%
	Other	5	10%	48.50	0	0%	0%	5	100%	12%
	Retention concern	6	12%	34.17	1	17%	12%	5	83%	12%

**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			Non-HRD
		N	%	N	%	% of HRD	N	%	% of Non-HRD
Total Discontinuations Since Start Of Psychosocial Pathway		165	100%	45	27%	100%	120	73%	100%
	Retained	137	83%	34	25%	76%	103	75%	86%
	Discontinued	28	17%	11	39%	24%	17	61%	14%

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

		Total		HRD			Non-HRD
		N	%	N	%	% of HRD	N	%	% of Non-HRD
Total Discontinuations this RP		35	100%	6	17%	100%	29	83%	100%
	Retained	34	97%	6	18%	100%	28	82%	97%
	Discontinued	1	3%	0	0%	0%	1	100%	3%

7.1.6 Discontinuations

2021-Present All discontinuations from the ADRC study 2021-Present categorized by year

		N
Discontinued Per Year		65
	2021	18
	2022	17
	2023	11
	2024	12
	2025	6
	2026	1

Mean Change in Discontinuation from 2021-present: -33%

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			Non-HRD
			N	%	N	%	% of HRD	N	%	% of Non-HRD
Total			6	100%	2	33%	100%	4	67%	100%
	Retention Pathway		4	67%	1	25%	50%	3	75%	75%
		Dementia	1	25%	1	100%	100%	0	0%	0%
		Normal Control	3	75%	0	0%	0%	3	100%	100%
	No Retention Pathway		2	33%	1	50%	50%	1	50%	25%
		Dementia	0	0%	0	0%	0%	0	0%	0%
		Normal Control	2	100%	1	50%	100%	1	50%	100%

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		632	100%
	Data Pulls for Publication	118	19%
	Data Pulls for Internal Tracking	249	39%
	Database Management	126	20%
	Reports/Visualizations	53	8%
	Data Quality Checks	86	14%

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 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 RP Data Set
Data Dictionary for the above Data Sets.
Cumulative Enrollment Demograpic Data Set

P30 RPPR Participation Summary Report 2026