www.hbregistry.org.uk 1 © copyright haemoglobinopathy registry - central middlesex hospital...
TRANSCRIPT
London (North West)
Haemoglobinopathy Registry
1© Copyright Haemoglobinopathy Registry - Central Middlesex Hospital 2003-2004
ww
w.h
breg
istr
y.or
g.uk
Haemoglobinopathy Registry in the Haemoglobinopathy Registry in the Clinical Management of Patients:Clinical Management of Patients:
Progress & UpdateProgress & Update
77thth July 2004 July 2004
Presented By:
Dr Mark LaytonAnnette Gilmore
2© Copyright Haemoglobinopathy Registry - Central Middlesex Hospital 2003-2004
ww
w.h
breg
istr
y.or
g.uk
Haemoglobinopathy RegistryHaemoglobinopathy RegistryProject TeamProject Team
Hb Registry Board Dr M Layton Dr N Philpott Dr G Hughes Jean Griffiths Dr M Soljak Mr S James Dr M Alli Mr K Martin Annette Gilmore Priscilla Plocki
EHR Team: Prof. Sally C Davies Dr J Howard Annette Gilmore Sameer J Patankar
3© Copyright Haemoglobinopathy Registry - Central Middlesex Hospital 2003-2004
ww
w.h
breg
istr
y.or
g.uk
North West London ParticipantsNorth West London Participants
Central Middlesex and Northwick Park: Prof. S C Davies Dr J Howard Dr S Allard
Ealing: Dr C Michie Dr N Philpott Dr G Abrahamson
Hammersmith: Prof. I Dokal Dr M Layton
West Middlesex: Dr G Hughes Dr M Sekhar Dr A Davies
Data Co-ordinators: Annette Gilmore Priscilla Plocki
4© Copyright Haemoglobinopathy Registry - Central Middlesex Hospital 2003-2004
ww
w.h
breg
istr
y.or
g.uk
EU Participants:EU Participants:Hydroxyurea RegistryHydroxyurea Registry
Yves Beuzard Paris Christina Borgna-Pignatti Ferrara Maria Domenica Cappellini Milan Sally C. Davies London Lucia de Franceschi Verona Pierre Fondu Brussels Frederic Galacteros Creteil Renzo Galanello Cagliari Robert Girot Paris Dimitri Loukopoulos Athens Marianne de Montalambert Paris Eliazer Rachmilewitz Jerusalem Corrina McMahon Dublin
Co-ordinated by: Dr M Roberts-Harewood
5© Copyright Haemoglobinopathy Registry - Central Middlesex Hospital 2003-2004
ww
w.h
breg
istr
y.or
g.uk
AimsAims
Local Accurate information for clinical practice, clinical
governance & audit, and planning services Collaboration and information sharing Impact on future research
General Study the natural history of the Haemoglobinopathies Evaluation of interventions - Hydroxyurea (HU) in SCD
patients
6© Copyright Haemoglobinopathy Registry - Central Middlesex Hospital 2003-2004
ww
w.h
breg
istr
y.or
g.uk
EHR Research Ethics ProcessEHR Research Ethics Process
Data Protection Act Registration[Registration No. Z5730583]
MREC [Approval - MREC/99/2/4] LREC [Approval - BEC 612] Patient Information and Consent Forms Secure Access to Registry (PATS):
Password Access Encrypted Data Communications
7© Copyright Haemoglobinopathy Registry - Central Middlesex Hospital 2003-2004
ww
w.h
breg
istr
y.or
g.uk
EHR Process (1)EHR Process (1)
Standardise Data Collection: Proformas (MDS & EDS) – Adobe Acrobat (PDF) Data Dictionary and Guidelines for Completion Proformas, Consent Forms, Guidelines, etc. –
External Secure Website Submitted to Registry by Post or Fax
8© Copyright Haemoglobinopathy Registry - Central Middlesex Hospital 2003-2004
ww
w.h
breg
istr
y.or
g.uk
EHR Process (2)EHR Process (2)
Data Processing and Storage: Automated Data Validation & Processing Automated Data Log for Validation by Data
Collector (‘To Be Approved’ Report) After Final Validation (‘Final’ Report) – Data
Entered in to Patient Analysis & Tracking System (PATS Database) – Dendrite Clinical Systems
Data Outputs: Automated Reporting:
Clinical Reports (Microsoft Word) Data and Reports to Clinicians (Microsoft Excel)
(Data and Reports Returned on CD)
9© Copyright Haemoglobinopathy Registry - Central Middlesex Hospital 2003-2004
ww
w.h
breg
istr
y.or
g.uk
Achievements of the RegistryAchievements of the Registry
Demographic Information for Monitoring & Service Provision
Individualized Clinical Patient Reports Monitoring and Evaluation of Hydroxyurea
Treatment Developed in Collaboration with EU and UK
Doctors Haemoglobinopathy Registry Website
www.hbregistry.org.uk
10
© Copyright Haemoglobinopathy Registry - Central Middlesex Hospital 2003-2004
ww
w.h
breg
istr
y.or
g.uk
European Haemoglobinopathy Registry (EHR) European Haemoglobinopathy Registry (EHR) Progress Report for CMH, Ealing, Hammersmith Progress Report for CMH, Ealing, Hammersmith
and West Middlesex Hospitals 31/03/2004and West Middlesex Hospitals 31/03/2004
Haemoglobinopathy Registry
0
100
200
300
400
500
CMH Ealing Hammersmith West Middlx
No
. of
Pat
ien
ts
No. of Active Patients Identified per HospitalNo. of Patients Consented to Hb RegistryNo. of Patients Data Collected
Note: Active patient ≡ Seen in hospital in last 36 months as IP or OPD.
11
© Copyright Haemoglobinopathy Registry - Central Middlesex Hospital 2003-2004
ww
w.h
breg
istr
y.or
g.uk
Central Middlesex Hospital Central Middlesex Hospital HaemoglobinopathyHaemoglobinopathy
Patients (538) by PCT of Residence Patients (538) by PCT of Residence
Har r ow 18%
Br ent 49%
UK 6%
Over seas 1%
Other London 11%
Westminster 1%
Kensington & Chelsea 0%
Hammer smith & Fulham
3%
Hil l ingdon 3%
Hounslow 1%
Eal ing 7%
12
© Copyright Haemoglobinopathy Registry - Central Middlesex Hospital 2003-2004
ww
w.h
breg
istr
y.or
g.uk
Ealing HospitalEaling HospitalHaemoglobinopathyHaemoglobinopathy
Patients (77) by PCT of Residence Patients (77) by PCT of Residence
Eal ing 90%
Hounslow 5%
Hammer smith & Fulham
0%
Har r ow 0%
Br ent 1%
Hi l l ingdon 0%
Kensington & Chelsea 0%
Westminster 0%
Other London 1%
Over seas 0% UK 3%
13
© Copyright Haemoglobinopathy Registry - Central Middlesex Hospital 2003-2004
ww
w.h
breg
istr
y.or
g.uk
Hammersmith Hospital Hammersmith Hospital HaemoglobinopathyHaemoglobinopathy
Patients (173) by PCT of ResidencePatients (173) by PCT of Residence
Hi l l ingdon 3%
Har r ow 2%
Br ent 13%Eal ing 21%
Hammer smith & Fulham
27%
Hounslow 5%
Kensington & Chelsea 4%
Westminster 2%
Other London 12%
Over seas 2%
UK 9%
14
© Copyright Haemoglobinopathy Registry - Central Middlesex Hospital 2003-2004
ww
w.h
breg
istr
y.or
g.uk
West Middlesex Hospital West Middlesex Hospital HaemoglobinopathyHaemoglobinopathy
Patients (40) by PCT of Residence Patients (40) by PCT of Residence
Hounslow 87%
Kensington & Chelsea 0%
Westminster 0%Other London 0%
Over seas 0%
UK 0%
Hammer smith & Fulham
5%
Eal ing 8%Hi l l ingdon 0%
Br ent 0%
Har r ow 0%
15
© Copyright Haemoglobinopathy Registry - Central Middlesex Hospital 2003-2004
ww
w.h
breg
istr
y.or
g.uk
CMH, Ealing, Hammersmith, West CMH, Ealing, Hammersmith, West Middx. Hospitals HaemoglobinopathyMiddx. Hospitals HaemoglobinopathyPatients (828) by PCT of Residence Patients (828) by PCT of Residence
Hounslow 7%
Har r ow 12%
Br ent 36%
Hil l ingdon 2%
Eal ing 17%
Hammer smith & Fulham
8%
UK 6%Over seas 1%
Other London 9%
Westminster 1%
Kensington & Chelsea 1%
16
© Copyright Haemoglobinopathy Registry - Central Middlesex Hospital 2003-2004
ww
w.h
breg
istr
y.or
g.uk
CMH, Ealing, Hammersmith, West CMH, Ealing, Hammersmith, West Middx. Hospitals Haemoglobinopathy Middx. Hospitals Haemoglobinopathy Patients (828) by PCT of ResidencePatients (828) by PCT of Residence
0
50
100
150
200
250
300
No
. of
Pat
ien
ts
Patient's PCT of Residence
West Middlesex Hospital
Hammersmith Hospital
Ealing Hospital
Central Middlesex Hospital
17
© Copyright Haemoglobinopathy Registry - Central Middlesex Hospital 2003-2004
ww
w.h
breg
istr
y.or
g.uk
CMH, Ealing, Hammersmith,CMH, Ealing, Hammersmith,West Middx. HospitalsWest Middx. Hospitals
828 Patients by Age Group828 Patients by Age Group
0
50
100
150
200
250
300
350
Central MiddlesexHospital
HammersmithHospital
Ealing Hospital West MiddlesexHospital
0-13 Years 14-20 Years > 20 Years
18
© Copyright Haemoglobinopathy Registry - Central Middlesex Hospital 2003-2004
ww
w.h
breg
istr
y.or
g.uk
CMH, Ealing, Hammersmith,CMH, Ealing, Hammersmith,West Middx. HospitalsWest Middx. Hospitals
828 Patients by Age Group 828 Patients by Age Group
22727%
12014%
48159%
0-13 Years 14-20 Years > 20 Years
19
© Copyright Haemoglobinopathy Registry - Central Middlesex Hospital 2003-2004
ww
w.h
breg
istr
y.or
g.uk
CMH, Ealing, Hammersmith,CMH, Ealing, Hammersmith,West Middx. HospitalsWest Middx. Hospitals
828 Patients by Hb Type 828 Patients by Hb Type
SS 53%
SC 21%
SBThal 10%
Other 6%Missing
Diagnosis 3%
Thal Syndromes 7%
20
© Copyright Haemoglobinopathy Registry - Central Middlesex Hospital 2003-2004
ww
w.h
breg
istr
y.or
g.uk
Hb SS Patients 16 Years and Older Hb SS Patients 16 Years and Older Currently on HydroxyureaCurrently on Hydroxyurea
Adult HbSS Patients on HU
0
20
4060
80
100
120140
160
180
Nu
mb
er o
f P
atie
nts
On Hydroxyurea
Adult HbSS Patients
0
20
40
60
80
100
120
140
160
180
Ealing Hammersmith West Middlesex Central Middlesex
Num
ber
of P
atie
nts
On Hydroxyurea
Adult HbSS Patients
Adult HbSS Patients On HydroxyureaEaling 12 2Hammersmith 67 10West Middlesex 5 0Central Middlesex 142 22
Adult HbSS Patients on HU
020406080
100120140160180
Nu
mb
er o
f P
atie
nts
On Hydroxyurea
Adult HbSS Patients
0
20
40
60
80
100
120
140
160
180
Ealing Hammersmith West Middlesex Central Middlesex
On Hydroxyurea
Adult HbSSPatients
21
© Copyright Haemoglobinopathy Registry - Central Middlesex Hospital 2003-2004
ww
w.h
breg
istr
y.or
g.uk
IndividualizedIndividualizedPatientPatientReportingReporting
Baseline Data Complete EHR
Initial Registration Proforma
Annual Follow-up Storage in PATS Clinical Reporting
in Word & Excel
Adult Patients with Sickle Cell DiseaseFirst Consultation Proforma
NHS No
Hosp No
Patient's postcode
Date of Birth / /Sex M F
8. First SCD presentation
Doctor's SignatureNurse's Signature
3. Date of consultation / /
9. Ethnic origin British Irish Any other white background
White/Black Caribbean White/Black African White/Asian Any other mixed background
Indian Pakistani Bangladeshi Any other Asian background within (c)
Caribbean African Any other black background within (d)
Chinese Any other ethnic group
18. Alpha Thal trait No Yes Not Known
19. No. of functional alpha genes
23. Specific antibodies
20. G6PD deficiency No Yes Not Known
21. RBC allo antibodies No Yes Not Known
22. RBC phenotyped No Yes Not Known
24. Diagnosis made by:1. Antenatal screening
2. Neonatal screening
3. Postnatal
4. Family screening
5. Symptomatic presentation
6. Routine/Other Assessment
7. Not known
wks gestation
25. Was PND offered? No Yes
27. Was PND accepted? No Yes
28. PNDResult
Months
29. Age at diagnosis
59. No. of dactylitis events58. Dactylitis No Yes Not Known
months60. Age 1st dactylitis event
Last name
First name
Consultant (surname)
MUST
16. Hb type SS SC SBTh+ SBTho S+HPFH Other 17. State
50669
22
© Copyright Haemoglobinopathy Registry - Central Middlesex Hospital 2003-2004
ww
w.h
breg
istr
y.or
g.uk
Monitoring ofMonitoring ofHydroxyureaHydroxyureaTreatmentTreatment
Baseline Data: Complete EHR
Initial Registration Proforma
Follow-up Data: Complete at each
patient OPD visit Data Stored in PATS Clinical Reporting in
Word & Excel
Keep copy in Hospital Notes with record of comments and full physical examination (if done)
Write in black ink, using clear capitals. Items in red MUST be completed. Circles must be completely filled in.
Blood Transfusion Exchange Venesection
Hosp. No.
Diagnosis Pain Other
Hospital CMH Other
Weight .HU Daily Dose mgs
WCC . 10^9/l
Hb . g/dl
MCV . fl
MCH . pg
g/dlMCHC .RDW .
10^9/lPlatelets
10^9/lNeuts .NRBC /100
%Retics .
Albumin g/L
mmol/LNa
mmol/LK .
mmol/LUrea .mol/LCreatinine
IU/LAST
IU/LALT
IU/LgGT
mol/LTotal Bilirubin
Total protein g/L
IU/LAlk. Phosphate
IU/LLDH
ng/LRed Cell folateng/LSerum B12
Ferritin ng/ml
mmol/lTIBCmmol/lSerum Fem/mHZPP
secsPTTK
PT . secs
Pain in community No Yes If Yes, describe
Date seen / /
HU Toxicity No Yes If Yes, describe
Other problems No Yes If Yes, describe
Examine No Yes Abnormalities
IP No YesState other hospital
State other diagnosis
HU dose Unchanged Increased Decreased Restarted Stopped
If Stopped give date / /
Episode No.
Signature of Doctor/Nurse
Next Appt
Were HU doses missed No Yes Unknown
If Yes, no. of IP days
No. units in No. mls outDate of LMP / /
RBC .
%Hb F .%Hb S .%Hb A2 .%Hb A .%Hb Other .
If Yes, no. of missed doses
Entered into PATS: .... / .... / .... Initials: .......
Items in boldare essential
30815
23
© Copyright Haemoglobinopathy Registry - Central Middlesex Hospital 2003-2004
ww
w.h
breg
istr
y.or
g.uk
MCV, Hb F, Neutrophils and Hb & HU Dose
1 1 Toxic Episodes
2 15 7 23 4 4 8 8 IP Days
0.0
20.0
40.0
60.0
80.0
100.0
120.0
140.0
22/0
8/199
5
+2 M
onth
s
+4 M
onth
s
+6 M
onth
s
+8 M
onth
s
+10
Mon
ths
+12
Mon
ths
+14
Mon
ths
+16
Mon
ths
+18
Mon
ths
+20
Mon
ths
+22
Mon
ths
+24
Mon
ths
+26
Mon
ths
+28
Mon
ths
+30
Mon
ths
+32
Mon
ths
+34
Mon
ths
+36
Mon
ths
+38
Mon
ths
+40
Mon
ths
+42
Mon
ths
+44
Mon
ths
+46
Mon
ths
+48
Mon
ths
+50
Mon
ths
+52
Mon
ths
+54
Mon
ths
+2 M
onth
s
+4 M
onth
s
+6 M
onth
s
+8 M
onth
s
+10
Mon
ths
+12
Mon
ths
+14
Mon
ths
+16
Mon
ths
+18
Mon
ths
+20
Mon
ths
+22
Mon
ths
+24
Mon
ths
+26
Mon
ths
MC
V (
fl),
Hb
F (
%),
Neu
tro
ph
ils
(10^
9/l)
an
d H
b (
g/d
l)
0
5
10
15
20
25
HU
Do
se (
mg
/kg
/day
)
Calculated dose (mg/kg/Day) MCV (fl) Hb F (%) Neutrophils (10^9/l) Hb (g/dl) Total Interval Markers HU Toxic Episodes IPDays
Patient XPatient XHaematological & Clinical ReportHaematological & Clinical Report
24
© Copyright Haemoglobinopathy Registry - Central Middlesex Hospital 2003-2004
ww
w.h
breg
istr
y.or
g.uk
Lessons Learned (1)Lessons Learned (1)
Central Registry Model Works Significant Resources Required to Complete
Collection and Processing/Reporting of Retrospective Data
Adequate Resources Required to Continue Longitudinal Follow-Up: Clinical Follow-Up and Research
Improved Patient Care: Compliance Follow-Up Monitoring & Evaluation Service Planning
25
© Copyright Haemoglobinopathy Registry - Central Middlesex Hospital 2003-2004
ww
w.h
breg
istr
y.or
g.uk
Lessons Learned (2)Lessons Learned (2)
Need to Improve the Efficiency of the Data Submission and Processing using Web based Technology: Online Data Submission Online Data Validation Online Data Retrieval Ability to View PATS Data Online
Require more IT Specialist Input: Web based PATS Server and Additional Software Development
26
© Copyright Haemoglobinopathy Registry - Central Middlesex Hospital 2003-2004
ww
w.h
breg
istr
y.or
g.uk
Contact DetailsContact DetailsDr Mark Layton
Haematology Department
Commonwealth Building
Hammersmith Hospital
Du Cane Road
London W12 0NN
Tel: 020-8383 1320
Fax: 020-8383 2175
email:[email protected]
Annette Gilmore
EHR Co-ordinator
Haematology Department
Central Middlesex Hospital
Acton Lane
London
NW10 7NS
Tel: 020-8453 2135
Fax: 020-8965 1115
email:[email protected]
Sameer J Patankar
IT Consultant
Haematology Department
Central Middlesex Hospital
email: [email protected]
email:[email protected]
www: http://www.hbregistry.org.uk
Dr J Howard
Haematology Department
Central Middlesex Hospital
Acton Lane
London
NW10 7NS
Tel: 020-8453 2433
Fax: 020-8965 1115
email: [email protected]