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

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

UK prevalence study June 2009

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 studies160 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 EPharmacoepidemiology & Drug Safety (2004) 13: S237-8

Treatment of high-risk hypertensive patients in the United Kingdom: 1997-2001MacDonald 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 KingdomMacDonald 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 referralsdrug prescriptionsco-morbiditiesGP 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 ~10,000 members GPRD ~ 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