Brent Sickle Cell and Thalassaemia Centre

The collection contains materials collected or published by Brent Sickle Cell and Thalassaemia Centre, including: - A selection of reports, NHS Guides and patient manuals. - Conference papers and proceedings. These are both national and international, and were arranged or attended by members of the Centre. - Publications produced to educate the public, families and professionals, especially to raise awareness of sickle cell disease. - Press cuttings collated by the Centre that relate to the work of the Centre, and more widely to sickle cell disease. - Dissertations and theses. - Film reels, VHS tapes and audio cassettes containing teaching and public awareness films.

1980s-2010s

19 boxes, 33 videocassettes, 3 DVDs, 6 audio cassettes, 1 CD-ROM, 95 digital items

The collection did not have a specific arrangement at the point of acquisition, but was arranged into the following sections by the cataloguer:

A: Administrative material, including reports and material relating to the running of the Centre and its work;

B: Publications and grey literature, both produced and collected by the Centre;

C: Meeting papers for groups and organisations with which staff members of the Centre were involved;

D: Conferences and events co-organised or attended by staff members of the Centre;

E: Other materials collected by the Centre (reprints and theses);

F: Audio-visual material, including audio and video recordings (to be added to the catalogue in due course).

Original titles are given in quotation marks, all other titles were assigned by the cataloguer.

Donated in October 2017

Research into sickle cell disease and thalassaemia grew in the 1960s after significant numbers of first generation black and other minority ethnicity children were born with the condition and often died young. Public awareness and education campaigns were initially started by parent groups such as OSCAR (Organisation for Sickle Cell Anaemia Research) and then caught the attention of the medical profession. Initial research was aimed at finding a cure. The Sickle Cell and Thalassaemia Centre (SCTC) was the first specialist sickle cell centre in the UK, and was opened in Brent in 1979 (work on establishing it began in the mid-1970s). The three key women responsible were Dr Mica Brozovic (first specialist consultant haematologist in the UK), Dame Professor Elizabeth Anionwu (first specialist nurse) and Joan Henthorn (Chief Laboratory Scientific Officer, the first laboratory specialist in the UK.) The SCTC was initially based at Central Middlesex hospital, then moved to Willesden, then moved into the community before coming back to Central Middlesex Hospital where it is based at the time of writing. The SCTC originally specialised in sickle cell disease, but expanded to include thalassaemia in the mid-1980s. It established the first specialist laboratory services and developed the first comprehensive non selective antenatal and new-born screening programme in the UK. This was a regional service offered to patients in north-west London, Hertfordshire and Bedfordshire. In more recent years the SCTC established the European Haemoglobinopathy Registry (EHR), a database of patients with haemoglobinopathies. The SCTC also encouraged the establishment of other centres elsewhere in the UK and internationally. SCTC staff produced training programmes and other educational resources for healthcare professionals and also continued to raise public awareness and understanding of the conditions. Today the main functions are providing an information service to local patients, testing services, genetic counselling, and providing education and training.

The Centre archive has some crossover with the Sickle Cell Society archive, which is also held at Wellcome Collection. See reference SA/SCS for more details.

This collection has been catalogued and is available to library members. Some items have access restrictions which are explained in the item-level catalogue records.

Wellcome may acquire the administrative archive of the Centre in due course.

Brent Sickle Cell and Thalassaemia Centre collated or created this collection, and transferred it directly to Wellcome.