Transcript Databases - National Therapy Centres
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
region affecting MS – gender, age, ethnicity,
Trends
time – how MS epidemiology changes over
Why does it matter?
Greater
understanding
of MS in the UK Allocation of
resources
regionally – nationwide and 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 practices in the UK from 6% of GP 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 C
urr 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 O
2
T 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