The PD-DOC Core Data Set (CDS) consists of those variables required to be gathered for each subject whose data is entered into the PD-DOC database. In 2005, working groups of Udall Center and invited experts deliberated to establish the components of each CDS section.
The PD-DOC CDS is shown below:
I. General Clinical
A. Demographics (Form 02)
B. Primary Diagnosis 1 (Form 04)
C. PD Features (Form 06)
D. Diagnostic Features 1 (Form 08)
E. Family History of PD 1 (Form 10)
F. Mini-Environmental Risks Questionnaire for PD Patients-Baseline (MERQ-PD-B)
(Form 12)
G. UPDRS
Part I (Form 16)
Part II (Form 18)
Part III (Form 20)
Part IV 2 (Form 22)
H. Modified Hoehn & Yahr Staging (Form 24)
I. Modified Schwab & England ADL Scale (Form 26)
J. PD Related Medication Log (Form 50)
II. Cognitive/Behavioral
A. Cognition/Behavior Questionnaire 1 (Form 28)
B. Mini Mental Status Exam (MMSE) 3 (Form 30)
C. Hopkins Verbal Learning Test – Revised 3 (HVLT-R) (Form 32)
D. Verbal Fluency (Controlled Oral Word Association Test [COWAT])
(Form 34)
E. Letter-Number Sequencing Test 3 (LNST) (Form 36)
F. Geriatric Depression Scale 4 (Short Version; GDS-15) (Form 38)
G. Neuropsychiatric Inventory Questionnaire 5 (NPI-Q) (Form 40)
III. Postmortem Brain Neuropathological Findings
A. NACC Neuropathology Data Form 6,Version 9(Form 46)
B. Supplemental Neuropathology Form 6 (Form 48)
IV. Blood sent to NINDS Human Genetics Repository (Coriell)
A. Specimen Collection (Form 42)
V. Visit Information
A. Signature Form (Form 44)
VI. Subject Conclusion
A. Conclusion of Participation7 (Form 52)
1 To be completed by an expert clinician.
2 To be completed on all subjects even those not taking PD medications.
3 Due to copyright restrictions, forms to be provided to users by PD-DOC.
4 Self-Report Form.
5 To be completed during an interview with a caregiver.
6 To be completed by an expert neuropathologist.
7To be completed when subject concludes participation.