1. European Cooperative Network for Research, Diagnosis and Therapy of Parkinson´s Disease EuroPa Plenary Meeting WORK PACKAGE 3 WORK PACKAGE 3 - Patient Registry -

2. - MAIN TASKS - Establishment of an european Registry of Parkinson´s Establishment of an european Registry of Parkinson´s Disease patients Disease patients Development of the Minimal Data Set (MDS) and Development of the Minimal Data Set (MDS) and Sampling Procedure for patient recruitment Sampling Procedure for patient recruitment Participation in the database development and test-run Participation in the database development and test-run Keep track of the weekly entry rate and follow up visits Quality control of medical data entry

3. - MILESTONES - Time Due (months) Completed milestones Ongoing milestones 1 st period Start of data entry 18 2 nd period First 1000 patients 30 First 4000 patients 36

4. - DELIVERABLES - MONTHNATURE CURRENT STATUS 1 st meeting of the Registry group 2Other CC meeting 01/02 Registry policy 6Other Discussed at SC meeting 07/02 Discussed at SC meeting 07/03 Approved 08/03 Minimal Data Set 12Public Finalized 12/03 Updated 09/03 2 nd meeting of the Registry group 18Other Conference call 06/03 Functioning user´s- interface 18Other Available since 05/03

5. - CENTER STATUS - Actively recruiting Web data entry Ethical Committee approval Data Protection approval Follow up visits on going Marburg London Groningen no Innsbruck Barcelona no Lisbon no Toulouse not needed no Tel Aviv not needed no Naples no Prague no Lund not active

6. - REGISTRY ENTRY OVER TIME - planned obtained Milestones (months) Patients 0 18 30 34 36 4000 3000 2000 1000 500 397 1610 1776

7. - BREAKDOWN OF CENTRES - N=1776 Innsbruck (277) Marburg (237) Naples (211) London (205) Toulouse (183) Prague (185) Barcelona (123) Lisbon (116) Groningen (119) Tel Aviv (120)

8. - RANDOM SAMPLE - N= 1447 Innsbruck (232) Marburg (127) Naples (117) London (184) Toulouse (182) Prague (165) Barcelona (122) Lisbon (107) Groningen (116) Tel Aviv (95)

9. - FIRST DATABASE QUERY - Test the functionality of the Recruitment Tool Test the functionality of the Recruitment Tool Check-up of the completeness of all Forms Check-up of the completeness of all Forms Comparability of the results among centres Comparability of the results among centres Medical data quality control Medical data quality control Contribution to the future exploitation of the Registry Contribution to the future exploitation of the Registry OBJECTIVES OBJECTIVES

10. - QUERY PATIENTS - Marburg Groningen London Innsbruck

11. - HOEHN & YAHR - H&Y 1 – 1,5 H&Y 2 – 2,5 H&Y 3 - 4 H&Y 5 Marburg 34 (15%) 40 (18%) 60 (27%) 41 (18%) 22 (10%) 13 (6%) 6 (2%) London 9 (5%) 14 (7%) 31 (17%) 65 (36%) 20 (11%) 2 (1%) Innsbruck 25 (10%) 2 (0,8%) 96 (38%) 39 (15%) 61 (24%) 22 (8%) 2 (0,8%) Groningen 7 (7%) 10 (10%) 36 (36%) 24 (24%) 16 (16%) 6 (6%) 0 (0%)

12. - DEMENTIA - PSYCHOSIS DEPRESSION - DEMENTIAPSYCHOSISDEPRESSION Marburg 5 (2%)22 (10%)15 (7%) London 26 (14%)40 (22%)17 (9%) Innsbruck 35 (14%)32 (13%) 74 (29%) Groningen 20 (20%)8 (8%) 19 (19%)

13. - PAIN - SLEEP DISORDERS - PAIN SLEEP DISORDERS Marburg 31 (14 %) 70 (32%) London 91 (50%)128 (71%) Innsbruck 114 (46%)179 (72%) Groningen 24 (24%) 66 (66%)

14. - PRELIMINARY CONCLUSIONS - Marked heterogeneity of clinical features among centres * Selection bias * Geographical differences * Interrater reliability

15. - WP3 PROPOSALS - Check the validity of the database Implement the export tool Implement the export tool Define protocols for common database queries Define protocols for common database queries