Development and Presentation of the ReMuS Register

Transcription

1 Development and Presentation of the ReMuS Register Mgr. Jana Vojáčková, MBA IMPULS, Endowment Fund

2 Year Foundation of the Register - Registration of Endowment Fund IMPULS by the Office for Personal Data Protection - Memorandum about cooperation with SNIL - Inclusion of MS patients on DMD therapy - Gradual inclusion of individual MS Centers -12/ specialized centers involved out of 15, 2920 patients

3 Year ) 16th Jedlička Days, Prague, 2013, Lecture ReMuS Characteristics of the Register Dana Horáková, MD, PhD 2) Seminar 1st Faculty of Medicine, Charles University, and General University Hospital, Prague, October 2013, Lecture MS Register in the Czech Republic (ReMuS) and Pharmacovigilance Dana Horáková, MD, PhD

4 Year Continuation of data collection of patients on DMD therapy - 6/2014 Involvement in European Register EUReMS -12/ specialised centers involved, 5639 patients

5 Year ) Parliamentary seminar, Prague, November 2014, Lecture New Possibilities of Treatment, Outlook for the Future, Accessibility 2) ČNS, Ostrava, November 2014, Lecture Relevance of Databases in Case of MS. Results of the Czech Register ReMuS

6 Year Opening of the Register for non DMD patients -15 MS centers out of 15 involved; 7786 patients - Possibility of use of data for commercial sphere

7 Year ) 17th Jedlička Days, Prague, May 2015, Lecture ReMuS Contribution for Clinical Practice 2) Seminar ReMuS, Brno, October 2015, Lecture Development of the Register, Outcomes, Their Application and Contribution

8 Year ) Seminar ReMuS, Brno, October 2015, Lecture Relations in Register ReMuS and Informed Consent Mgr. Jana Vojáčková, MBA 4) ECTRIMS, Barcelona, October 2015, Poster ReMuS CZECH NATIONAL REGISTER OF MS PATIENTS 2 YEARS EXPERIENCE

9 Year ÚPV Granting of trademark No Continuation of data collection of DMD, and non DMD patients - 12/2016, 9044 DMD and 1955 non DMD patients in total

10 Year ) ECTRIMS, London, September 2016, Poster EVOLUTION OF THE CZECH NATIONAL REGISTER REMUS 3 YEARS EXPERIENCE 2) ČSNS, Prague, November 2016, Lecture Efectivity of therapeutic strategies from Real Clinical Practice according to Register Data

11 Year ) Multiple Sclerosis News, September 2016, Article ReMuS Czech Statewide Register of Patients with Multiple Sclerosis

12 Year Opening of the register for the academic sphere - Introduction of structured control of data quality - Launching of Web pages in English - 6/2017, 9583 DMD, and 2013 non DMD patients in total - Register contains data from 90% of patients on DMD

13 Year ) Remedia, January 2017, article Glatiramer Acetate in the Czech Republic Outcomes from the ReMuS Register Doc. MUDr. Radomír Taláb, CSc.

14 Year ) Multiple Sclerosis Management, Prague, March 2017, Lecture What Can we Learn from MS Registers? 3) 18. Jedlička Days, Prague, May 2017, Lecture Information on ReMuS Register 4) 18. Jedlička Days, Prague, May 2017, Lecture ReMuS Experience from MS center Teplice MUDr. Marta Vachová

15 Year ) International Meeting, Athens, June 2017, Lecture Registries in MS. How much do they contribute for better treatment outcomes and improve patient management?

16 Year ) ČSNS, Brno, November 2017, Lecture What Can ReMuS Register Do? 7) ČSNS, Brno, November 2017, Poster Use of Markovsky Models and Survival Analysis in Examining Progression of Disability in MS Patients Grishko A., Horáková D., Uher T., Sobíšek L. 8) Conference ReMuS, Prague, November 2017, Lecture Importance of Registers in Medicine

17 Year ) Conference ReMuS, Prague, November 2017, Lecture ReMuS Register and GDPR Mgr. Jana Vojáčková, MBA 10) Conference ReMuS, Prague, November 2017, Lecture Exploratory Analysis of Spatial and Temporal EDSS Correlation in MS Patients - Use of Data from ReMuS Ing. Lukáš Sobíšek, PhD

18 Year ) Conference ReMuS, Prague, November 2017, Lecture Register as a Dry Statistics, or Helpful Source of Data?

19 Endowment Fund IMPULS Czech Republic Katerinska 30, Prague, Czech Republic