National Orthopaedic Registry of Malaysia Mesyuarat Ketua-ketua - PDF document

How NORM come about? National Orthopaedic Registry of Malaysia • Mesyuarat Ketua-ketua Jabatan Ortopedik in July 2007. (NORM) • Steering committee was then form. • Work started ……… Dr M Dr M o oha ham m m m ad ad An Anwa war Ha r Hau Abd u Abdul ul l a l ah Hos Hospi pi t a t al Ra l Raj a Pe j a Per e r em m p pua uan n Zai nab I I I I , Kot Kot a Bh a Bhar ar u, u, Ke Kel a l ant nt an an. 21. 21. 4. 4. 20 2009 09 Steering Committee Board ORTHOPAEDIC 1 Dr. Mohammad Anwar Hau Abdullah HRPZ II, KB (Chairman) REGISTRIES: 2 Dr. Zulkiflee Osman HKL (Co-Chairman) 3 Dr. Ahmad Tajuddin HSNZ, KT 4 Dr. Se To Boon Chong Hospital Pulau Pinang. 1. DIABETIC FOOT/HAND 5 Dr. Pan Chee Huan HTF, Perlis 2. HIP FRACTURE 6 Dr. Mohamad Yazid b Din HSB, Alor Setar. 7 Dr. Joehaimey Johari HRPZ II, Kota Bharu 8 Dr. Saadon Ibrahim HSI, JB 9 Dr. Mohd Zamzuri b. Mohd Zain HTAA, Kuantan 10 Dr.Tan Boon Chong Hospital Pulau Pinang. 11 Dr.Abdul Rauf Ahmad HTJ, Seremban NORM Objectives To establish a nation wide orthopaedic database that can Determine the number and the trend of hip fracture and diabetic foot/hand in Malaysia. Polish away the ‘guess estimate’ attitude - morbidity of Determine the socio demographic profiles of these hip fracture and diabetic foot/hand in country patients to better identify the high-risk group in our Malaysian population. Focus on the real risk of hip fracture and diabetic foot/hand Determine the efficiency of and adherence to current treatment guidelines Determine the burden of hip fracture and diabetic foot/hand among Malaysian Determine the cost burden to the nation and the cost- effectiveness of treatment and prevention programs Promote effective treatment & prevention programs Facilitate research

Registries Governance Board (KIV) Hip Fracture Registry Name Position Initiated in year 2007 1 Datuk Dr. Noor Hisham bin Abdullah TKPK Perubatan Hospital incharge: HSNZ, Kuala Trengganu 2 Dato’ Dr. Hj Ramlee bin Hj Rahmat TKPK Kesihatan Awam Site data provider : 18 sites 3 Datuk Dr. Azmi Shapie Pengarah Perkembangan KKM 4 Dr. Lim Teck Onn Pengarah Rangkaian CRC Diabetic Foot/Hand Registry Initiated in year 2008 5 Dr. Se To Boon Chong Ketua Perkhidmatan Ortopedik Hospital incharge: 6 Datuk Dr Burhan Tan Abdullah Pakar Perunding Ortopedik, HKL HRPZ II, Kota Bharu. Site data provider : 18 sites Site p.i. 1 8 participating Sites………. Investigator(s) Clinical Site Tuanku Fauziah H Raja Perem puan Zainab I I H Sultanah Bahiyah H 1. Dr. Zulkiflee Osman Hospital Kuala Lumpur Penang H 2. Dr. Faris Kamaruddin Hospital Umum Sarawak Sultanah Nur Raja Perm aisuri Bainon H Zahirah H 3. Dr. Nahulan A/L V.Theva Rajah Hospital Queen Elizabeth, Kota Kinabalu, Sabah Serdang H 4. Dr. Saadon Ibrahim Hospital Sultan Ismail, Johor. Sg Buloh H Am pang H 5. Dr. Pan Chee Huan Hospital Tuanku Fauziah, Kangar. Klang H Queen Elizabeth H Kuala Lum pur H 6. Dr. Se To Boon Chong Hospital Pulau Pinang. Tuanku Jaafar H Saraw ak General H 7. Dato’ Dr Suresh Chopra Hospital Bahiyah, Alor Star, Kedah. Melaka H 8. Dato’ Dr. Ramanathan A/L Ramaiah Hospital Ipoh, Perak. Tengku Am puan Afzan H 9. Dr. Thirumal Hospital Tengku Ampuan Rahimah, Klang. Sultan I sm ail H Sultanah Am inah H Site p.i. (cont.)… Project progress 10. Dr. Basir Towil Hospital Serdang, Selangor. # Project Activities Date 11. Dr. Ng Yue Onn Hospital Ampang, Selangor. 1 Preparation of proposal September 2007 12. Dr. Abdul Rauf Ahmad Hospital Tuanku Jaafar, N.Sembilan. 2 Paper CRF drafted & revised September 2007 13. Dr. N.Sivapathasundram Hospital Melaka, Melaka. 3 Proposal approved (by sponsors) and funding November 2007 4 Web development meeting April 2008 14. Dr. Thevarajaan Karuppiah Hospital Sultanah Aminah, Johor Bharu, Johor. 5 Participation of all SDP secured June 2008 15. Dato’ Dr. Premchandran A/L P.S. Menon Hospital Tengku Ampuan Afzan, Kuantan, 6 Pilot study July 2008 Pahang 7 NORM national launch August 2008 16. Dr. Ahmad Tajuddin Hospital Sultanah Nur Zahirah, Kuala Terengganu, Terengganu. 17. Dr. Mohammad Anwar Hau Abdullah Hospital Raja Perempuan Zainab II, Kota Bharu, Kelantan. 18. Dr. Ng Swee Soon Hospital Selayang, Selangor.

Source Data Providers (SDP) Project progress cont.. Currently 18 MOH Hospitals 1 st User Training August 2008 8. 1 st NORM Steering Committee 9. September 2008 10 MREC Approval for NORM: Diabetic Foot/Hand November 2008 Later others 2 nd User Training 11 November 2008 12 Design a dummy table for data analysis January 2009 – Private 13 MREC Approval for NORM: Hip Fracture February 2009 – Universities 2 nd NORM Steering Committee 14 March 2009 – armed forces 15 Data Cleaning Started early April 2009 and still in progress First report of data Expected October 2009 16 Number of date entered June 2008 to April 2009 Number of date entered Hip Fracture June 2008 to April 2009 Diabetic foot/hand registry 370 1147 BENEFITS with e- BEN FITS with e-NORM NORM Benefits continues… REAL TIME CAPABLE of DOWNLOADING YOUR REPORT OWN CENTRE DATA - For further analysis, own performance YOUR OWN -For your own research use CENTRE DATA at -Presentation FINGER TIPS -Publication Compare YOUR -Improvement of treating skills CENTRE STATISTICS -State planning with NATIONAL STATISTICS

Result Compare data • Only aggregated statistical result will be reported by the registry. • No result that can identify patient will be published. NORM DATA FLOW NORM CRF Diabetic foot/hand registry: SDP 9 th edition Electronic Data Capture Return processed internet (EDC) data Hip fracture registry: NORM Data processing office 3 rd edition Real time analysis internet Online data access Report Users DIABETIC FOOT HAND CRF

HIP FRACTURE CRF E-norm Web application E-norm Web application https://www.macr.org.my/enorm 2 1 Address bar: https indicating use of SSL technology E-norm Web application Web application owner authentication using SSL (Secure Sockets Layer) certificate is applied to conduct an authenticated, strongly encrypted online transaction. This certificate ensures that the web site does not belong E-NORM consists of 2 registries to an impostor and message privacy.

Search and Register Patient Add new Hip fracture patient e-CRF Search and Register Patient Add new Diabetic foot/hand registry patient e-CRF Gantt Chart Thank you & G ’ day Acknow ledgem ent Ministry of Health Malaysia NIH Clinical Research Centre, HKL Participating centres – Nurses, Doctors Datamed Computing Services Sdn. Bhd. ClinResearch Sdn. Bhd.

Problem face: • Some sdp active, some less active • Lack man power- data entry • CRF- incomplete data