P30 RPPR Participation Summary Report 2026

Reporting Period (RP) = 2025-02-01 to 2026-01-31 Grant Start Date = 2021-08-15

Clinical Core Progress Report Prose:
455 participants were active in the P30 for part or all of the reporting period (02/01/2025- 01/31/2026), 24% from HRD (mostly African American). Of active participants, 44 participants newly enrolled, 20 from HRD. We followed 312 participants with the UDS, 119 remotely with T-Cog and/or phone call visits. Since 69% of the active cohort comes from outside of Chicago, if only considering participants from Chicago (N=140) 45% are from HRD. Approximately 64% of the cohort has been followed for at least 5 years while 26% 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 13% considering. Of HRDs, 76% are agreed with an additional 17% considering. There were 38 Core deaths in the period of report (30 pre-committed) and 31 completed brain autopsies (16% 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: 1341/8485 (16%)

Number of HRD participants consented to autopsy / total consented to autopsy 84/364 (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		455	100%	111	24%	100%
	Active at RP End	411	90%	102	25%	92%
	Deceased	38	8%	7	18%	6%
	Discontinued	6	1%	2	33%	2%

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

				Total		HRD
				N	%	N	%	% of HRD
Total Active in RP				455	100%	111	24%	100%
	Participated this RP			312	69%	77	25%	69%
		Enrolled this RP		44	14%	20	45%	26%
			Active at RP End	44	100%	20	45%	100%
		Not enrolled this RP		268	86%	57	21%	74%
			Active at RP End	254	95%	54	21%	95%
			Deceased	14	5%	3	21%	5%
	Did not participate this RP			143	31%	34	24%	31%
		Not enrolled this RP		143	100%	34	24%	100%
			Active at RP End	113	79%	28	25%	82%
			Deceased	24	17%	4	17%	12%
			Discontinued	6	4%	2	33%	6%

2 Active Participants

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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		44	100%	20	45%	100%	24	55%	100%
	Recruited Year 5	20	45%	6	30%	30%	14	70%	58%
	Recruited Year 4	13	30%	7	54%	35%	6	46%	25%
	Recruited Year 3	5	11%	3	60%	15%	2	40%	8%
	Recruited Year 2	3	7%	2	67%	10%	1	33%	4%
	Recruited Year 1	2	5%	2	100%	10%	0	0%	0%
	Recruited Before Grant Start	1	2%	0	0%	0%	1	100%	4%

---

2.1.2 Demographics of Enrolled this RP

		Total		HRD			Non-HRD
		N	%	N	%	% of HRD	N	%	% of Non-HRD
Total Enrolled this RP		44	100%	20	45%	100%	24	55%	100%
	White, non-hispanic	26	59%	2	8%	10%	24	92%	100%
	Black or African American	11	25%	11	100%	55%	0	0%	0%
	Hispanic	4	9%	4	100%	20%	0	0%	0%
	Asian	3	7%	3	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		44	100%	20	45%	100%	24	55%	100%
	Dementia	23	52%	5	22%	25%	18	78%	75%
	Normal Control	17	39%	11	65%	55%	6	35%	25%
	Mild Cognitive Impairment	4	9%	4	100%	20%	0	0%	0%

---

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		44	100%	20	45%	100%	24	55%	100%
	NM Clinician	16	36%	6	38%	30%	10	62%	42%
	Event	6	14%	6	100%	30%	0	0%	0%
	Non-NM Clinician	6	14%	2	33%	10%	4	67%	17%
	Word of Mouth	6	14%	3	50%	15%	3	50%	12%
	Internet	4	9%	1	25%	5%	3	75%	12%
	Clinical Trials Referral	2	5%	1	50%	5%	1	50%	4%
	Media Coverage	2	5%	0	0%	0%	2	100%	8%
	Other (specify)	2	5%	1	50%	5%	1	50%	4%

---

2.1.5 Recruitment Source by Diagnosis of Enrolled this RP

			Total		HRD
			N	%	N	%	% of HRD
Total Enrolled this RP			44	100%	20	45%	100%
	Dementia		23	52%	5	22%	25%
		NM Clinician	13	57%	3	23%	60%
		Non-NM Clinician	5	22%	1	20%	20%
		Internet	3	13%	0	0%	0%
		Clinical Trials Referral	1	4%	1	100%	20%
		Word of Mouth	1	4%	0	0%	0%
	Mild Cognitive Impairment		4	9%	4	100%	20%
		Event	2	50%	2	100%	50%
		NM Clinician	1	25%	1	100%	25%
		Word of Mouth	1	25%	1	100%	25%
	Normal Control		17	39%	11	65%	55%
		Event	4	24%	4	100%	36%
		Word of Mouth	4	24%	2	50%	18%
		Media Coverage	2	12%	0	0%	0%
		NM Clinician	2	12%	2	100%	18%
		Other (specify)	2	12%	1	50%	9%
		Clinical Trials Referral	1	6%	0	0%	0%
		Internet	1	6%	1	100%	9%
		Non-NM Clinician	1	6%	1	100%	9%

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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		455	111	24%	344	76%

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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		455	100%	111	24%	100%	344	76%	100%
	Participated	312	69%	77	25%	69%	235	75%	68%
	Did Not Participate	143	31%	34	24%	31%	109	76%	32%

---

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		321	100%	242	75%	100%	79	25%	100%
	In-person	202	63%	143	71%	59%	59	29%	75%
	Remote	117	36%	97	83%	40%	20	17%	25%
	Both In-Person & Remote	2	<1%	2	100%	<1%	0	0%	0%

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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			117	100%	20	17%	100%	97	83%	100%
	Telephone		112	96%	19	17%	95%	93	83%	96%
		Informant Only	84	75%	14	17%	74%	70	83%	75%
		T-cog	28	25%	5	18%	26%	23	82%	25%
	Video		2	2%	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		637	100%	149	23%	100%	488	77%	100%
	Did Not Participate	325	51%	72	22%	48%	253	78%	52%
	Participated	312	49%	77	25%	52%	235	75%	48%

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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		455	100%	111	24%	100%	344	76%	100%
	Screened this RP	20	4%	6	30%	5%	14	70%	4%
	Not screened this RP	435	96%	105	24%	95%	330	76%	96%

---

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		455	100%	111	24%	100%	344	76%	100%
	Contacted	407	89%	101	25%	91%	306	75%	89%
	Not contacted	48	11%	10	21%	9%	38	79%	11%

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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 332 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. 267 visits were not eligible for a Social Work call, 33 were completed, 10 are still in progress and 22 were deemed no longer pursuing. 21 of those no longer pursuing are because of an internal decision and 1 were due to a difficult to reach participant.

		Total		HRD			Non-HRD
		N	%	N	%	% of HRD	N	%	% of Non-HRD
Total Visits 6 Months		332	100%	81	24%	100%	251	76%	100%
	Successfully talked to participant, no further action needed	33	10%	6	18%	7%	27	82%	11%
	Pursuing for Social Work PCO	10	3%	2	20%	2%	8	80%	3%
	No longer pursuing participant for call	22	7%	4	18%	5%	18	82%	7%
	Social Work PCO Call Not Needed	267	80%	69	26%	85%	198	74%	79%

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

		Total		HRD			Non-HRD
		N	%	N	%	% of Non-HRD	N	%	% of HRD
Total PCO Calls this RP		33	100%	27	82%	100%	6	18%	100%
	2-5 years of participation	10	30%	10	100%	37%	0	0%	0%
	5-10 years of participation	13	39%	9	69%	33%	4	31%	67%

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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			1,013	100%	289	29%	100%	724	71%	100%
	Total Active		455	45%	111	24%	38%	344	76%	48%
		10+ years of participation	119	26%	30	25%	27%	89	75%	26%
		5-10 years of participation	172	38%	33	19%	30%	139	81%	40%
		2-5 years of participation	85	19%	18	21%	16%	67	79%	19%
		<2 years of participation	78	17%	29	37%	26%	49	63%	14%
	Total active in Cook or Collar counties		317	31%	92	29%	32%	225	71%	31%
		10+ years of participation	88	28%	24	27%	26%	64	73%	28%
		5-10 years of participation	125	39%	27	22%	29%	98	78%	44%
		2-5 years of participation	49	15%	15	31%	16%	34	69%	15%
		<2 years of participation	54	17%	25	46%	27%	29	54%	13%
	Total active in Cook county		241	24%	86	36%	30%	155	64%	21%
		10+ years of participation	66	27%	22	33%	26%	44	67%	28%
		5-10 years of participation	95	39%	25	26%	29%	70	74%	45%
		2-5 years of participation	33	14%	14	42%	16%	19	58%	12%
		<2 years of participation	46	19%	24	52%	28%	22	48%	14%

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		455	100%	111	24%	100%	344	76%	100%
	Cognitively Normal Control	233	51%	59	25%	53%	174	75%	51%
	Impaired Not MCI	9	2%	5	56%	5%	4	44%	1%
	Mild Cognitive Impairment	32	7%	12	38%	11%	20	62%	6%
	Amnestic Multidomain Dementia	53	12%	16	30%	14%	37	70%	11%
	Frontotemporal Dementia	23	5%	6	26%	5%	17	74%	5%
	Primary Progressive Aphasia	96	21%	11	11%	10%	85	89%	25%
	Other Dementia	8	2%	2	25%	2%	6	75%	2%
	Unknown	1	<1%	0	0%	0%	1	100%	<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	194	11	0	1	0	27	233	25%
Impaired Not MCI	0	6	0	0	1	2	9	56%
Mild Cognitive Impairment	1	21	5	0	0	5	32	38%
Amnestic Multidomain Dementia	0	2	14	16	14	7	53	30%
Frontotemporal Dementia	1	3	8	5	5	1	23	26%
Primary Progressive Aphasia	11	18	12	22	19	14	96	11%
Other Dementia	0	3	3	0	1	1	8	25%
Unknown	0	0	0	0	0	1	1	0%
Total	207	64	42	44	40	58	455	24%

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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			455	100%	111	24%	100%	344	76%	100%
	Female		265	58%	74	28%	67%	191	72%	56%
		White, non-hispanic	197	74%	6	3%	8%	191	97%	100%
		Black or African American	49	18%	49	100%	66%	0	0%	0%
		Asian	9	3%	9	100%	12%	0	0%	0%
		Hispanic	9	3%	9	100%	12%	0	0%	0%
		More than one race	1	<1%	1	100%	1%	0	0%	0%
	Male		190	42%	37	19%	33%	153	81%	44%
		White, non-hispanic	163	86%	10	6%	27%	153	94%	100%
		Black or African American	15	8%	15	100%	41%	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		455	100%	111	24%	100%	344	76%	100%
	White, non-hispanic	360	79%	16	4%	14%	344	96%	100%
	Black or African American	64	14%	64	100%	58%	0	0%	0%
	Asian	16	4%	16	100%	14%	0	0%	0%
	Hispanic	14	3%	14	100%	13%	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			455	100%	111	24%	100%	344	76%	100%
	Within Chicago		140	31%	63	45%	57%	77	55%	22%
	Outside of Chicago		315	69%	48	15%	43%	267	85%	78%
		Within Cook county	101	32%	23	23%	48%	78	77%	29%
		Within collar counties	76	24%	6	8%	12%	70	92%	26%
		Not within cook or collar counties	138	44%	19	14%	40%	119	86%	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			455	100%	111	24%	100%	344	76%	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		438	96%	94	21%	85%	344	79%	100%
		Within Cook county	237	54%	82	35%	87%	155	65%	45%
		Within collar counties	76	17%	6	8%	6%	70	92%	20%
		Not within cook or collar counties	125	29%	6	5%	6%	119	95%	35%

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2.5 Biomarkers

2.5.1 Active Participants Imaging Scan Completion

Participants 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				455	100%	222	49%	233	51%
	At Least 1 Scan Completed			399	88%	192	48%	207	52%
		MRI		383	96%	186	49%	197	51%
			Structural	383	100%	186	49%	197	51%
			Resting State	368	96%	173	47%	195	53%
			Diffusion	369	96%	179	49%	190	51%
			Flair	267	70%	103	39%	164	61%
			All Sequences	250	65%	87	35%	163	65%
		Amyloid PET		204	51%	105	51%	99	49%
		FDG PET		82	21%	65	79%	17	21%
		Tau PET		175	44%	95	54%	80	46%
	No Scans Completed			56	12%	30	54%	26	46%

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2.5.2 Active Participants Elevated Amyloid or Tau

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			379	100%	200	53%	179	47%
	Amyloid PET		204	54%	105	51%	99	49%
		Positive	59	29%	51	86%	8	14%
		Negative	86	42%	42	49%	44	51%
		No Reads	59	29%	12	20%	47	80%
	Tau PET		175	46%	95	54%	80	46%
		Positive	53	30%	52	98%	1	2%
		Negative	68	39%	25	37%	43	63%
		No Reads	52	30%	17	33%	35	67%

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2.5.3 Total Biomarker Scan Completion for Active Participants

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			1,548	100%	787	51%	761	49%
	Amyloid PET		261	17%	123	47%	138	53%
		Structural	931	99%	426	46%	505	54%
		Resting State	852	91%	376	44%	476	56%
		Diffusion	859	91%	390	45%	469	55%
		Flair	564	60%	176	31%	388	69%
		All Sequences	519	55%	143	28%	376	72%
	FDG PET		101	7%	83	82%	18	18%
	MRI		939	61%	430	46%	509	54%
	Tau PET		247	16%	151	61%	96	39%

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2.5.4 Biomarker Scans 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			200	100%	110	55%	90	45%
	Amyloid PET		52	26%	24	46%	28	54%
		Structural	75	95%	43	57%	32	43%
		Resting State	72	91%	40	56%	32	44%
		Diffusion	67	85%	35	52%	32	48%
		Flair	67	85%	35	52%	32	48%
		All Sequences	59	75%	27	46%	32	54%
	FDG PET		20	10%	19	95%	1	5%
	MRI		79	40%	44	56%	35	44%
	Tau PET		49	24%	23	47%	26	53%

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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			455	100%	111	24%	100%	344	76%	100%
	Participants with at least 1 blood draw		433	95%	99	23%	89%	334	77%	97%
		APOE captured	414	96%	97	23%	98%	317	77%	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		22	5%	12	55%	11%	10	45%	3%
		APOE captured	7	32%	5	71%	42%	2	29%	20%
		APOE not currently expected	15	68%	7	47%	58%	8	53%	80%

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2.6.2 Blood Draws within RP

		Total		HRD			Non-HRD
		N	%	N	%	% of HRD	N	%	% of Non-HRD
Total Active in RP		455	100%	111	24%	100%	344	76%	100%
	Blood draw within RP	183	40%	48	26%	43%	135	74%	39%
	No blood draw within RP	272	60%	63	23%	57%	209	77%	61%

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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			455	100%	111	24%	100%	344	76%	100%
	Agreed or considering		422	93%	103	24%	93%	319	76%	93%
		Agreed to autopsy	364	86%	84	23%	82%	280	77%	88%
		Considering autopsy	58	14%	19	33%	18%	39	67%	12%
	Not agreed or unknown		33	7%	8	24%	7%	25	76%	7%
		Autopsy intent unknown	2	6%	2	100%	25%	0	0%	0%
		Refused autopsy	31	94%	6	19%	75%	25	81%	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			637	100%	149	23%	100%	488	77%	100%
	Agreed or considering		585	92%	136	23%	91%	449	77%	92%
		Agreed to autopsy	499	85%	109	22%	80%	390	78%	87%
		Considering autopsy	86	15%	27	31%	20%	59	69%	13%
	Not agreed or unknown		52	8%	13	25%	9%	39	75%	8%
		Autopsy intent unknown	2	4%	2	100%	15%	0	0%	0%
		Refused autopsy	50	96%	11	22%	85%	39	78%	100%

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3 Recruitment

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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		871	100%	574	66%	100%	247	28%	100%	50	6%	100%
	Online Survey	669	77%	543	81%	95%	84	13%	34%	42	6%	84%
	Event	176	20%	5	3%	<1%	163	93%	66%	8	5%	16%
	Direct Contact	26	3%	26	100%	5%	0	0%	0%	0	0%	0%

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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		871	100%	247	28%	100%	574	66%	100%	50	6%	100%
	NM Clinician	282	32%	25	9%	10%	241	85%	42%	16	6%	32%
	Event	172	20%	159	92%	64%	5	3%	<1%	8	5%	16%
	Internet	152	17%	21	14%	9%	128	84%	22%	3	2%	6%
	Media Coverage	76	9%	9	12%	4%	67	88%	12%	0	0%	0%
	Unknown	61	7%	14	23%	6%	25	41%	4%	22	36%	44%
	Non-NM Clinician	46	5%	6	13%	2%	40	87%	7%	0	0%	0%
	Word of Mouth	41	5%	6	15%	2%	34	83%	6%	1	2%	2%
	Social Media	30	3%	4	13%	2%	26	87%	5%	0	0%	0%
	Email Blast/E-newsletter	7	<1%	1	14%	<1%	6	86%	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%
	Support Group	1	<1%	0	0%	0%	1	100%	<1%	0	0%	0%

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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 HRD	N	%	% of Non-HRD	N	%	% of URG
Total Recruited in RP		871	100%	247	28%	100%	574	66%	100%	50	6%	100%
	Enrolled	36	4%	18	50%	7%	17	47%	3%	1	3%	2%
	Eligible	2	<1%	2	100%	<1%	0	0%	0%	0	0%	0%
	Potentially Eligible	557	64%	174	31%	70%	342	61%	60%	41	7%	82%
	Ineligible	262	30%	46	18%	19%	209	80%	36%	7	3%	14%
	Not Interested	6	<1%	2	33%	<1%	4	67%	<1%	0	0%	0%
	Not Yet Evaluated	8	<1%	5	62%	2%	2	25%	<1%	1	12%	2%

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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		4,310	100%	2,399	56%	100%	779	18%	100%	1,132	26%	100%
	Online Survey	3,005	70%	2,044	68%	85%	362	12%	46%	599	20%	53%
	Historic Import	715	17%	190	27%	8%	27	4%	3%	498	70%	44%
	Event	442	10%	32	7%	1%	375	85%	48%	35	8%	3%
	Direct Contact	148	3%	133	90%	6%	15	10%	2%	0	0%	0%

4 Co-Enrollments

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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 = 455)

		Total		HRD			Non-HRD
		N	%	N	%	% of HRD	N	%	% of Non-HRD
Total		432	100%	93	22%	100%	339	78%	100%
	PPA	232	54%	28	12%	30%	204	88%	60%
	NUSAP	116	27%	24	21%	26%	92	79%	27%
	ADNI-4	24	6%	17	71%	18%	7	29%	2%
	ADNI-3	20	5%	11	55%	12%	9	45%	3%
	CLARITI	17	4%	7	41%	8%	10	59%	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 220 participants that have ever signed one of these consent forms, 116 were active in the reporting period in core.

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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 = 455)

		Total		HRD			Non-HRD
		N	%	N	%	% of Non-HRD	N	%	% of HRD
Total		629	100%	501	80%	100%	128	20%	100%
	PPA	286	45%	250	87%	50%	36	13%	28%
	NUSAP	116	18%	92	79%	18%	24	21%	19%
	ARMADA	49	8%	39	80%	8%	10	20%	8%
	CB2	34	5%	32	94%	6%	2	6%	2%
	ADNI-4	25	4%	7	28%	1%	18	72%	14%
	CLARITI	22	3%	12	55%	2%	10	45%	8%
	ADNI-3	20	3%	9	45%	2%	11	55%	9%
	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%

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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		807	100%	655	81%	100%	152	19%	100%
	PPA	376	47%	328	87%	50%	48	13%	32%
	NUSAP	152	19%	124	82%	19%	28	18%	18%
	ARMADA	63	8%	51	81%	8%	12	19%	8%
	CB2	41	5%	39	95%	6%	2	5%	1%
	ADNI-4	25	3%	7	28%	1%	18	72%	12%
	ALLFTD	24	3%	18	75%	3%	6	25%	4%
	CB1	23	3%	22	96%	3%	1	4%	<1%
	CLARITI	22	3%	12	55%	2%	10	45%	7%
	ADNI-3	21	3%	10	48%	2%	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%

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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		455	100%	111	24%	100%	344	76%	100%
	Enrolled	27	6%	7	26%	6%	20	74%	6%
	Not Enrolled	428	94%	104	24%	94%	324	76%	94%

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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		455	116	339
	Amnestic Multidomain Dementia	53	4	49
	Mild Cognitive Impairment	32	5	27
	Frontotemporal Dementia	23	0	23
	Cognitively Normal Control	233	105	128
	Primary Progressive Aphasia	96	0	96
	Other Dementia	8	0	8
	Unknown	1	0	1

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		220	16	76	128
	Actively Followed	103	15	69	19
	Minimal Contact	3	0	0	3
	Deceased	84	0	5	79
	Discontinued	25	0	2	23
	Not Enrolled in Core	4	0	0	4

There are 10 participants that were active in the clinical core during this reporting period that have since died or discontinued.

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5 Deceased Participants

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5.1 Neuropathology

5.1.1 Deaths & Autopsies

			Total		HRD			Non-HRD
			N	%	N	%	% of HRD	N	%	% of Non-HRD
Total Deaths in RP			38	100%	7	18%	100%	31	82%	100%
	Autopsy Completed		31	82%	5	16%	71%	26	84%	84%
		Agreed to autopsy	30	97%	5	17%	100%	25	83%	96%
		Considering autopsy	1	3%	0	0%	0%	1	100%	4%
	No Autopsy Expected		7	18%	2	29%	29%	5	71%	16%
		Agreed to autopsy	4	57%	1	25%	50%	3	75%	60%
		Refused autopsy	3	43%	1	33%	50%	2	67%	40%

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5.1.2 Neuropath Forms

		Total		HRD			Non-HRD
		N	%	N	%	% of HRD	N	%	% of Non-HRD
Total Autopsies in RP		31	100%	5	16%	100%	26	84%	100%
	NP forms completed	27	87%	4	15%	80%	23	85%	88%
	NP forms not completed	4	13%	1	25%	20%	3	75%	12%

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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			172	100%	29	17%	100%	143	83%	100%
	Autopsy Completed		132	77%	20	15%	69%	112	85%	78%
		Agreed to autopsy	130	98%	20	15%	100%	110	85%	98%
		Considering autopsy	2	2%	0	0%	0%	2	100%	2%
	No Autopsy Expected		40	23%	9	22%	31%	31	78%	22%
		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%

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6 NACC Packet Submissions

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6.1 NACC Packets/Forms

			Uploaded this RP	2025-02-01	2026-01-31
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

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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	527
	Dementia	801
	Impaired, not MCI	7
	MCI	165
	Unknown	1

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7 Psychosocial Pathway

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7.1 Psychosocial Pathway Numbers

7.1.1 Referrals by Status and Duration

		Total			HRD			Non-HRD
		N	%	Ave. Effort (min)	N	%	% of Non-HRD	N	%	% of HRD
Total Requests in RP		26	100%		23	88%	100%	3	12%	100%
	Completed	17	65%	44.65	17	100%	74%	0	0%	0%
	Denied	4	15%		2	50%	9%	2	50%	67%
	In progress	5	19%	48.75	4	80%	17%	1	20%	33%

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7.1.2 Referrals by Status, Risk Flag and Duration

			Total			HRD			Non-HRD
			N	%	Ave. Effort (min)	N	%	% of Non-HRD	N	%	% of HRD
Total Requests in RP			26	100%		23	88%	100%	3	12%	100%
	Completed		17	65%	44.65	17	100%	74%	0	0%	0%
		No Risk Flag	15	88%	42.27	15	100%	88%	0	0%	0%
		Risk Flag	2	12%	62.50	2	100%	12%	0	0%	0%
	Denied		4	15%		2	50%	9%	2	50%	67%
		No Risk Flag	4	100%		2	50%	100%	2	50%	100%
	In progress		5	19%	48.75	4	80%	17%	1	20%	33%
		No Risk Flag	4	80%	18.33	3	75%	75%	1	25%	100%
		Risk Flag	1	20%	140.00	1	100%	25%	0	0%	0%

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7.1.3 Referrals Participant Type

		Total			HRD			Non-HRD
		N	%	Ave. Effort (min)	N	%	% of Non-HRD	N	%	% of HRD
Total		34	100%		30	88%	100%	4	12%	100%
	Care/Study Partner	20	59%	50.00	17	85%	57%	3	15%	75%
	Participant	14	41%	43.91	13	93%	43%	1	7%	25%

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

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7.1.4 Referrals by Area

		Total			HRD			Non-HRD
		N	%	Ave. Effort (min)	N	%	% of Non-HRD	N	%	% of HRD
Total		37	100%		34	92%	100%	3	8%	100%
	Abuse *	3	8%	88.33	3	100%	9%	0	0%	0%
	Access to resources	9	24%	29.33	8	89%	24%	1	11%	33%
	Brain donation	1	3%	10.00	0	0%	0%	1	100%	33%
	Caregiver burden	8	22%	51.88	7	88%	21%	1	12%	33%
	Decline in neuropsych scores	1	3%	15.00	1	100%	3%	0	0%	0%
	Depression	7	19%	45.00	7	100%	21%	0	0%	0%
	Family conflict	2	5%	47.50	2	100%	6%	0	0%	0%
	Other	2	5%	14.00	2	100%	6%	0	0%	0%
	Retention concern	4	11%	37.50	4	100%	12%	0	0%	0%

**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 Non-HRD	N	%	% of HRD
Total Discontinuations Since Start Of Psychosocial Pathway		154	100%	115	75%	100%	39	25%	100%
	Retained	126	82%	97	77%	84%	29	23%	74%
	Discontinued	28	18%	18	64%	16%	10	36%	26%

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 Non-HRD	N	%	% of HRD
Total Discontinuations this RP		26	100%	23	88%	100%	3	12%	100%
	Retained	25	96%	22	88%	96%	3	12%	100%
	Discontinued	1	4%	1	100%	4%	0	0%	0%

7.1.6 Discontinuations

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

		N
Discontinued Per Year		64
	2021	18
	2022	17
	2023	11
	2024	12
	2025	6

Mean Change in Discontinuation from 2021-present: -20%

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%

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8 Data Management

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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		177	100%
	Data Pulls for Publication	33	19%
	Data Pulls for Internal Tracking	69	39%
	Database Management	30	17%
	Reports/Visualizations	15	8%
	Data Quality Checks	30	17%

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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