eCRF

Data entered into this eCRF are automatically saved

The contributor will also be able to return at a future date to view and/or edit the eCRF should new information regarding the patient/family become available

Part 3 - Clinical Features of PD & Investigations

"Minimal" (mandatory) | "Core" (some items can be missing) | "Extended" (ideal/optional)

Warning: The minimal dataset is not complete yet. Please be reminded that to complete the minimal dataset is mandatory in order to have samples processed for genetic analysis. Please continue or come back when you can complete at least the minimal dataset.

Motor Features

1. Resting tremor:

no
yes
unknown

2. Postural tremor:

no
yes
unknown

3. Action tremor:

no
yes
unknown

4. Slow movements:

no
yes
unknown

5. Rigidity/ stiffness:

no
yes
unknown

6. Gait difficulty:

no
yes
unknown

7. Gait freezing:

no
yes
unknown

8. Postural instability/ Falls:

no
yes
unknown

9. Dystonia:

no
yes
unknown

10. Clear favourable response to dopaminergic medication:

no
yes
unknown

11. Motor fluctuations (ON/OFF periods related to timing of dopaminergic medications):

no
yes
yеs, but the date is unknown
unknown

Date first observed (by history or examination)

12. Levodopa-induced dyskinesias:

no
yes
yеs, but the date is unknown
unknown

Date first observed (by history or examination)

13. Sleep benefit:

no
yes
unknown

14. Upper motor neuron signs (hyperreflexia, plus extensor plantar response or sustained clonus)

no
yes
unknown

15. First motor symptom:

Tremor
Micrographia
Stiffness\frozen shoulder
Impaired manual dexterity
Gait disorder
General slowing up
Other
unknown

Other (please specify):

Non-Motor Features

1. RBD

no
yes
unknown

2. Insomnia

no
yes
unknown

3. Excessive daytime sleepiness

no
yes
unknown

4. Depression symptoms

no
yes
unknown

5. Anxiety

no
yes
unknown

6. Mild cognitive impairment

no
yes
unknown

7. Dementia

no
yes
unknown

Year of first Occurrence

8. Visual hallucinations

no
yes
unknown

9. Impulse control disorder

no
yes
unknown

10. Constipation

no
yes
unknown

11. Urinary dysfunction

no
yes
unknown

12. Orthostatic hypotension

no
yes
unknown

13. Pain

no
yes
unknown

14. Hyposmia

no
yes
unknown

15. Underweight

no
yes
unknown

Atypical Features

1. Presence of atypical features

no
yes
unknown

Please specify the atypical features

PD-related Questionnaires and Rating Scales

Please tick any that are available: (Please give the patient's latest assessments)

1. Hoehn & Yahr

Stage:

1
1.5
2
2.5
3
4
5

Year of assessment:

2. UPDRS

Part III score

ON-medication
OFF-medication
not specified

Year of assessment:

Total score

ON-medication
OFF-medication
not specified

Year of assessment:

3. MDS-UPDRS

Part III score

ON-medication
OFF-medication
not specified

Year of assessment:

Total score

ON-medication
OFF-medication
not specified

Year of assessment:

4. CISI-PD

Scores for Motor signs:

Disability:

Motor complications (dyskinesia and fluctuations):

Cognitive status:

Total score:

Year of assessment:

5. PDQ-39

Total score:

Year of assessment:

6. NMSS

Total score:

Year of assessment:

7. NMSQ

Total score:

Year of assessment:

8. MOCA

Total score:

Year of assessment:

9. MMSE

Total score:

Year of assessment:

10. SCOPA-AUT

Total score:

Year of assessment:

Investigations

1. Brain CT

Year of most recent study

Result

normal
abnormal
unknown

Abnormal, please give details:

2. Brain MRI

Year of most recent study

Result

normal
abnormal
unknown

Abnormal, please give details:

3. DAT scan/PET

Year of most recent study

Result

normal
abnormal
unknown

Abnormal, please give details:

4. Transcranial sonography

Year of most recent study

Result

normal
abnormal
unknown

Abnormal, please give details:

5. Smell testing (e.g., UPSIT, Sniffin Sticks - please specify)

Year of most recent study

Result

normal
abnormal
unknown

Abnormal, please give details:

6. Polysomnography for RBD

Year of most recent study

Result

normal
abnormal
unknown

Abnormal, please give details:

7. Myocardial MIBG scintigraphy

Year of most recent study

Result

normal
abnormal:
unknown

Abnormal, please give details:

Treatment

1. Year of assessment (if possible, please use the same assessment year as when the UPDRS/MDS-UPDRS was administered):

2. PD medications

2.1 Levodopa

no
yes
unknown

2.2 COMT inhibitor (entacapone or opicapone)

no
yes
unknown

2.3 Dopamine agonist (e.g., pramipexole, ropinirole, piribedil, rotigotine)

no
yes
unknown

2.4 MAO-B inhibitor (selegiline, rasagiline)

no
yes
unknown

2.5 Anticholinergic (e.g., benzhexol, trihexyphenidyl)

no
yes
unknown

2.6 Amantadine

no
yes
unknown

2.7 Levodopa-equivalent daily dosage (LEDD): (Please use the LEDD calculator provided) Go to Calculator

3. Device-aided Therapies

Functional neurosurgery (e.g., DBS, pallidotomy)

no
yes
unknown

Year of surgery:

Apomorphine infusion

no
yes
unknown

Year commenced:

Levodopa-carbidopa intestinal gel

no
yes
unknown

Year commenced: