Databases
Using them to study MS in the
UK
Proposed research using:
 GPRD
(General Practice Research
Database)
 MSNTC
Northwood Database
Epidemiology




Prevalence - how many people are living with
MS?
Incidence - how many people are newly
diagnosed with MS every year?
Factors affecting MS – gender, age, ethnicity,
region
Trends – how MS epidemiology changes over
time
Why does it matter?

Greater understanding of MS in the UK

Allocation of resources – nationwide and
regionally

Having a voice – not a ‘hidden disease’
Epidemiology of MS is not well
understood

Limited information available compared to
other diseases e.g. cancer, diabetes

Estimated prevalence of 85,000 by
extrapolating data from a series of local
studies

MS Society funded survey in 2009
UK prevalence study
June 2009

First national project based on the best evidence
available

Showed that there are about 100,000 people with MS
in the UK

Researchers at the London School of Hygiene and
Tropical Medicine used data from the General
Practice Research Database (GPRD) to estimate of
the number of people with MS in the UK
What is GPRD?

Contains patient records from 6% of GP
practices in the UK

Anonymous patient data

The world’s largest primary care database

Used by academics around the world to
study different diseases
GPRD published studies
160 papers 2009 to 2011
Drug treatment discontinuation and achievement of target blood pressure and
cholesterol in United Kingdom primary care. MacDonald TM, Morant SV,
Mozaffari E Curr Med Res Opin 2007 23(11) 2765-74.
Treatment patterns for hypertension, dyslipidaemia, and both conditions in the
United Kingdom: 1997-2001. MacDonald TM, Morant SV, Baker CL, Mozaffari E
Pharmacoepidemiology & Drug Safety (2004) 13: S237-8
Treatment of high-risk hypertensive patients in the United Kingdom: 1997-2001
MacDonald TM, Morant SV, Baker CL, Mozaffari E Pharmacoepidemiology & Drug
Safety 2004 13: S103
Low treatment rates and poor goal attainment in patients with concomitant
hypertension and dsylipidaemia: data from the United Kingdom
MacDonald TM, Morant SV, Baker CL, Mozaffari E Pharmacoepidemiology & Drug
Safety 2004 13: S29-30
Increased rates of diagnosis for hypertension or dyslipidaemia in patients
previously identified with one of these risk factors: data from the United
Kingdom MacDonald TM, Morant SV, Mozaffari E Pharmacoepidemiology & Drug
Safety 2004 13: S302-3
New analyses of MS using GPRD
 In collaboration with University of Dundee

Access to database
 Input from epidemiologists + neurologist
Statistical analyses performed by Dr Steve
Morant
 Written for publication in peer-reviewed
journal by Dr Glenys Bloomfield

What can GPRD tell us?

Numbers of people with MS

prevalence
 incidence
 trends over last decade

Who is affected?

gender
 age
 region
What can GPRD tell us?

Treatment of MS
 hospital
referrals
 drug prescriptions
 co-morbidities
 GP contacts
Proposed research using:
 GPRD
(General Practice Research
Database)
 MSNTC
Northwood Database
MSNTC stats

We already record the number of

Individual sessions of O2T

Members receiving therapy – MS/non-MS

New members - MS/non-MS
MSNTC stats - Northwood
database
Much easier and more efficient method of
collecting data
 We can collect a lot more detailed
information on various therapies and who
uses them
 Useful for fundraising and raising the
profile of Therapy Centres – individually
and nationally

What else can the MSNTC
database tell us about MS?

We have a major resource

MSNTC
 GPRD
~10,000 members
~ 20,000 MS patients
We can learn important information about
the role of non-drug therapies in symptom
management
Treatment records
Treatment records can be
entered for each member
The system will calculate
 MSIS-29 results (average
answer to each question)
 MSIS-29 trends
(improvement/no
change/decline) for each
question
MSIS-29 Form
Tried and tested: the psychometric properties of the
multiple sclerosis impact scale (MSIS-29) in a
population-based study
Multiple Sclerosis Journal January 2009 vol. 15 no. 1 75-80
The MSIS-29 is an acceptable, reliable, and valid
method of recording quality of life. A significant
relationship between higher physical impact
scores of the MSIS-29 and higher Kurtzke EDSS
values suggests that it may be of use in clinical
trials to monitor progression.
MSIS-29 Form
The multiple sclerosis impact scale (MSIS-29)
is a reliable and sensitive measure
J Neurol Neurosurg Psychiatry 2004;75:266–269
The psychometric properties of the MSIS-29
are acceptable; it is a valuable outcome
measure in intervention studies of patients
with MS.
What can we do with this data?

With the help of Centres and their members we
can collect information on the progress of
individual members over time in a format that is
accepted by the medical community

When we have enough data we can analyse the
effects of different non-drug therapies on the
progress of MS using anonymous records from
our database
Conclusions

We have an opportunity to make important
contributions to our understanding of MS
using these resources

GPRD - epidemiology of MS in the UK, drug
treatments
 MSNTC Northwood database – role of
Therapy Centres and non-drug therapies
Conclusions

This will help ensure that MS receives the
recognition and resources that it needs

It will raise the profile of the MS Therapy
Centres and establish us as professional
and credible members of the MS
community