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British Scoliosis Research Foundation

Registered Charity Number 803772

Patrons: Mr. Michael Atherton OBE, Mrs. Roald Dahl & Mr. Bernie Ecclestone

 

 

- The British Scoliosis Research Foundation –

 Call for tenders to set up and run a National Scoliosis Register

 

The British Scoliosis Research Foundation (BSRF) is seeking proposals for the development of a National Scoliosis Register. The purpose of the Register will be to facilitate the study of adolescent idiopathic scoliosis with a view to establishing the cause or causes of the condition, and to provide better understanding of scoliosis and its management. A research grant of up to £250k is available to establish a register of at least 2000 and up to 10 000 individuals with idiopathic scoliosis.

 

The registry should contain at least:

 

1.    An anonymised clinical dataset

2.    DNA and lymphocytes for each individual

3.    Radiographic data

4.    An anonymised database accessible to researchers with projects approved by BSRF

5.    Consideration of follow up data collection

6.    Capacity to administer the database in the long term (at least 5 years)

 

The BSRF will expect applications for clinical research to use the register as it is being completed. The BSRF will be responsible for reviewing and refereeing such applications. The developer of the database will be able to make such applications.

 

The BSRF expects the Register to be used for various research topics, including the following:

 

1.    Explorations of the distribution of known genetic loci and linking them with scoliosis phenotypes

2.    Identifying populations and the risk factors for curve progression

3.    Validating imaging classification

4.    Developing genetic based classifications

5.    Identifying populations of phenotypic subgroups for genetic and clinical analysis

6.    Clinical research studies of subgroups

7.    Follow-up studies and help to identify populations for specific treatments

 

For further information please contact Mélina Mercier, Research Coordinator, at Melina.mercier@bsrf.co.uk or on 07886641150.

 

Download the Register Application Pack and Register Application Form.

 

The closing date for applications is 28th March 2008.