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Norfolk Arthritis Register is a large community based, long term observational study investigating the cause and outcome of inflammatory polyarthritis.

NOAR Research Aims

  • To establish and follow a large and dynamic cohort of patients with IP.
  • To collect medical and questionnaire data on relevant risk factors for development of IP.
  • To collect samples of serum, plasma and DNA for serological & immunological study.
  • To identify co-morbidity and mortality outcomes.
  • To establish the risk of cardiovascular disease in comparison with the general population

 

Download and read the NOAR Protocol 

Who is taking part?

People who meet the following criteria are being asked by their doctor/nurse/physiotherapist/occupational therapist if they would be willing to take part:

  • Aged over 16 years
  • 2 or more swollen joints persisting for more than 4 weeks
  • The symptoms have started in the last 2 years
  • Living in Norfolk at the time symptoms started
  • Informed consent (this is an ongoing agreement by a person to participate in research when he/she is fully aware of what participation is involved).

 

Download and read the Patient Information Sheet and Consent Form for the study.

Participation in the study is entirely voluntary and you are free to change your mind about taking part at any time. 

Why Norfolk?

  1. There is a stable population
    Once recruited to NOAR, many participants are followed for several years. There is a low rate of people moving out of the county, therefore making Norfolk an ideal place to conduct longitudinal studies such as the Norfolk Arthritis Register.
  2. Central pattern of referral
    The majority of NOAR participants, if they need hospital care, are seen at the Norfolk and Norwich University Hospital.
  3. Good links with GP Practices in the area
    The local General Practitioners (GP’s) have been very supportive of the Norfolk Arthritis Register since it started in 1989.
  4. Size of population
    NOAR recruits from a population of around 500,000 (living in both urban and rural areas) which is a large enough population to give us meaningful information about Inflammatory Polyarthritis.

 

What does the study involve?

Participants taking part in NOAR are seen by NOAR nurses at regular intervals, either at home or in a clinic.

Participants recruited up to 2008 (inclusive), are contacted annually for 5 years, then again at years 7, 8, 10, 12, 15, 18 and 20.

Participants recruited from 2013 are being followed for 5 years.

NOAR assessments include:

  • Obtaining informed consent
  • Answering questions about your current and previous health
  • Completion of a health assessment questionnaire
  • Blood pressure measurement
  • Joint examination
  • Measurement of height, weight, hip and waist
  • A blood test

Identifiable information about you will be held by the local research team, together with the data collected during the study. No-one outside the research team will have access to any identifying information and all identifiable information will be kept securely.  You will be allocated a unique study number and staff not directly involved with you will know you only by this number.

Fair Data Processing Statement

You are taking part in NOAR, the world’s first primary care based study of new onset cases of inflammatory polyarthritis, which has been carrying out research into inflammatory arthritis for over 20 years, currently more than 4000 people are taking part in this study. 

NOAR collects information (data) about you and we need to be fair, transparent and honest with you about what we do with the data. Identifiable information about you will be held by the NOAR nurses team at UEA (such as name, date of birth, NHS hospital number and address) and is kept separately in password protected databases. Researchers not directly involved with you but involved in analysing your data know only your unique NOAR study number.

Information held by the Health and Social Care and other UK NHS bodies (Hospital Episodes Statistics (HES)) may be given to the researchers and be used to provide data about your health status and hospital admissions.  To obtain information about hospital admissions from the Health and Social Care we will need to provide them with information about your NHS number, date of birth and gender and your unique NOAR ID number.  Once they link with these records they will remove the personal information and send us the information back for analyses.

For more information about how we use your information please follow the links below:

NOAR Transparency Information Sheet

UEA Data Protection

GDPR guidance for research in the NHS.

When presenting information in research articles your personal information is never revealed, these published articles can be found here.