The British Ophthalmic Surveillance Unit (BOSU)

 

BOSU News

An Introduction to the Reporting Scheme

Overview

The British Ophthalmological Surveillance Unit (BOSU) has been set up by the Royal College of Ophthalmologists with support from the Iris Fund For The Prevention Of Blindness (now Fight for Sight). It is a facility to enable ophthalmologists to participate in the nation-wide surveillance of uncommon ophthalmological conditions.

The unit will rely upon a monthly response from consultant and associate specialist ophthalmologists in the United Kingdom about new cases of the conditions stated on the BOSU Reporting Card. When a respondent reports a new case of one of the conditions under study BOSU will pass this information on to a researcher for investigation. Details of conditions included in the reporting scheme are given in the study protocols included in your BOSU ring-binder.

Aims & Objectives

The principal aims of BOSU are to involve ophthalmologists in the surveillance of rare conditions of public health importance and research into uncommon ophthalmological disorders. This advancement of knowledge will result in the improvement of prevention, treatment and service planning strategies. The unit will meet this aim by providing a nation-wide case ascertainment service to research workers in ophthalmology and related fields through an active case reporting scheme.

The provision of such a unified system will lessen the burden on reporting ophthalmologists of requests from numerous different sources for reporting cases of uncommon disorders.

Supplementary objectives include providing advice and assistance where appropriate to research workers on the design of their studies, and increasing awareness within the medical profession of the less common conditions studied.

Organisation

The management of the unit is undertaken by the BOSU Executive Committee. This is chaired by Mr. Miles Stanford. The Chairman is a member of and reports to the College Scientific Committee.

The British Ophthalmological Surveillance Unit is based at the Royal College of Ophthalmologists at 17 Cornwall Terrace, London, NW1 4QW. Its staff consist of a Research Co-ordinator and a Unit Secretary.

The surveillance unit will be supported by funding from the Iris Fund for the Prevention of Blindness. The running costs will also be met by a contribution from investigators.

Operation Of The Scheme

A gold report card containing a list of conditions being surveyed is sent every month to all respondents on the mailing list. The mailing also includes reporting instructions and, where appropriate, protocols for new studies. The reporting clinicians are asked to tick boxes against any of the reportable conditions they have seen in the preceding month, or tick the "Nothing To Report" box if none have been seen, and return the card to BOSU. A detachable slip is attached to the card for the ophthalmologist to keep a convenient record of patients reported.

"Positive" returns are identified by the Unit and then the appropriate investigator is notified. The investigator will then contact the reporting clinician directly to request completion of a brief questionnaire or permission to review case notes. Further research including enquiries to the patient is undertaken only with the permission of the ophthalmologist and, where appropriate the patient's GP.

The mailing list of 850 Consultant Ophthalmologists, Associate Specialists and Senior Lecturers in Ophthalmology has been developed and is systematically updated. The aim is to involve every senior doctor who may have clinical responsibility for patients with rare ophthalmological conditions.

Progress reports on the scheme will be published periodically. The Unit will produce an annual report which will be disseminated to all respondents and other interested parties. Investigators will be encouraged to submit their study findings for publication and to present them at the College Meeting.

This reporting system has been met with enthusiastic co-operation within other specialties, which has resulted in the increase in knowledge about the epidemiology of rare disorders and conditions.

The system is anonymous and BOSU will not hold any confidential patient data.

Inclusion Of Studies

A study is eligible for participation in the scheme if the condition of interest is a rare ophthalmological disorder (or a rare complication of a more common disease) of such low incidence or prevalence as to require ascertainment of cases on a national scale in order to generate sufficient numbers for study. The BOSU Executive Committee may on occasion consider inclusion of short-term or geographically limited studies of comparatively more common conditions.

In considering the suitability for inclusion in the BOSU scheme, the Executive Committee takes account of the importance of the study (with the advice of external 'expert referees' if necessary), the methodology to be employed, and considers whether the BOSU is the most appropriate means of ascertainment. Studies depending on reporting of patients immediately after admission, for example, are less suitable, although arrangements for immediate reporting by telephone could be made for some studies.

The system is flexible, with the list of conditions being reviewed regularly. Studies are accept ad for inclusion for a period agreed with the principal research worker, which will usually be 12 months, with continuation, subject to review, for two or three years. A new condition can if necessary be added to the report card the next month after final acceptance by the BOSU Executive Committee if there are urgent 'public health' considerations.

Proposed studies must have the approval of the appropriate Ethics Committee(s) (usually the investigator's local research ethics committee(s)) and must be assured of adequate funding. The Executive Committee must be satisfied that the work entailed in reporting cases will be a worthwhile contribution to well-designed studies, and will not make excessive demands on the time and goodwill of respondents.

Research workers who are interested in applying for the inclusion of their study in the BOSU scheme should contact Barny Foot, who will be happy to discuss protocols at the design stage. Guidelines on applications are also available from the office. The full application procedure will also involve the completion of a standard form and attending the Executive Committee meeting of the at which the proposal is discussed.

The British Ophthalmological Surveillance Unit Executive Committee

Chairman: Professor. M. R. Stanford

St. Thomas's Hospital

Mr. R. P. L. Wormald

Institute of Ophthalmology, Moorfields Eye Hospital

Mr. S. P. Harding

St Pauls Eye Unit, Royal Liverpool Hospital

Miss J. Rahi

Institute of Child Health

Dr E. M. Graham

St. Thomas's Hospital

Mr. C. Edelsten

The Ipswich Hospital NHS Trust

Professor A. Fielder

Western Eye Hospital

Dr. J. Thompson

Leicester Royal Infirmary

Professor C. J. MacEwen

Ninewells Hospital and Medical School

Mr. G. Turner

Royal Eye Hospital, Manchester

Professor J. Morgan

University Hospital of Wales

Miss G. Silvestri

Royal Victoria Hospital, Belfast

Research Co-ordinator: Mr. Barny Foot

The BOSU office may be contacted at:

17 Cornwall Terrace
London NW1 4QW
Tel: 020 7935 0702 ext. 217
Fax: 020 7935 9838

e-mail: BOSU@msn.com

Nemisys