Table 1 Clinical core available resources & data

From: 15 years of longitudinal genetic, clinical, cognitive, imaging, and biochemical measures in DIAN

Data:

Number of participants

Total assessment count

Number of participants with only 1 assessment

Number of participants with > 1 assessment

Mean assessments among participants with > 1 assessment

Distribution of assessment countb

Estimated Parental Age at Onset

671

1653

227

444

3.21

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Demographics

673

1431

288

385

2.97

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Health history

673

1659

229

444

3.22

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Family history

673

673

673

NA

NA

NA

Medications

605

NA

NA

NA

NA

NA

Physical & Neurologic exam findings

673

1647

231

442

3.20

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Clinician Judgment of Symptoms

673

1659

229

444

3.22

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Clinician Diagnosis, including Cognitive Status & Dementia

673

1659

229

444

3.22

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Informant Demographics

673

1432

287

386

2.97

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Exercise Questionnaire

673

1659

229

444

3.22

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Hollingshead Index of Social Position

673

1145

376

297

2.59

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Clinical Dementia Rating (CDR)

673

1659

229

444

3.22

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Geriatric Depression Scale (GDS)

672

1653

230

442

3.22

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Functional Assessment Questionnaire (FAQ)

670

1648

230

440

3.22

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Mini-mental Status Exam (MMSE)

671

1621

239

432

3.20

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Digit Span

673

1658

230

443

3.22

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Category fluency for animals & vegetable

673

1658

230

443

3.22

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Neuropsychiatric Inventory-Q (NPI-Q)

672

1652

231

441

3.22

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United Parkinson’s Disease Rating Scale (UPDRS)-Motor

673

1640

233

440

3.20

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Hachinski Ischemic Score & Cerebrovascular Risk Factors

673

1639

234

439

3.20

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  1. NA Not applicable
  2. aDIAN Obs Data Freeze 17 (DF17) was used to compute these numbers. There are 673 participants in DF17. The cutoff for DF17 was 6/30/2023.
  3. bThe leftmost bar represents participants with exactly 1 assessment, 2nd leftmost bar represents participants with exactly 2 assessments, etc.