The Fragile X Society’s Research Policy
We are is keen and willing to help potential researchers. However there are some basic guidelines to which we would expect all potential researchers to adhere and respect.
- The Fragile X Society maintains the absolute right to keep its membership details confidential.
- Not all families are willing to take part in research, hence our database includes information about each members' willingness to participate or not - only those members who have indicated that they are willing to participate in research are approached.
- All potential projects (protocol and ethics committee approval) must be submitted in writing to the Research Officer who will then pass them on to the members of the Fragile X Society’s Research Committee for vetting.
- Researchers are expected to be responsible for their own postage and photocopying costs.
- The Fragile X Society will supply a covering letter to be included in mailings to its members requesting their participation in research studies.
- The Fragile X Society requires feedback on the results of research in the form of a report published in the Society’s newsletter regardless of whether the research is published elsewhere.
- The Fragile X Society requires that its co-operation is acknowledged in published material.
- Written agreement to the above guidelines is a pre-requisite to the Fragile X Society’s co-operation.
The Fragile X Society
Rood End House
6 Stortford Road
Great Dunmow
Essex
CM6 1DA
Tel: 01371 875100
Outside UK: 00 44 1371 875100
Fax: 01371 859915
Outside UK: 00 44 1371 859915
Email: info@fragilex.org.uk
Website: www.fragilex.org.uk
The Fragile X Society is a registered charity no. 1127861, Company Registration no 6724061
See also
Research Professionals
Current UK Fragile X Studies
UK Research Reports
We are is keen and willing to help potential researchers. However there are some basic guidelines to which we would expect all potential researchers to adhere and respect.
- The Fragile X Society maintains the absolute right to keep its membership details confidential.
- Not all families are willing to take part in research, hence our database includes information about each members' willingness to participate or not - only those members who have indicated that they are willing to participate in research are approached.
- All potential projects (protocol and ethics committee approval) must be submitted in writing to the Research Officer who will then pass them on to the members of the Fragile X Society’s Research Committee for vetting.
- Researchers are expected to be responsible for their own postage and photocopying costs.
- The Fragile X Society will supply a covering letter to be included in mailings to its members requesting their participation in research studies.
- The Fragile X Society requires feedback on the results of research in the form of a report published in the Society’s newsletter regardless of whether the research is published elsewhere.
- The Fragile X Society requires that its co-operation is acknowledged in published material.
- Written agreement to the above guidelines is a pre-requisite to the Fragile X Society’s co-operation.
The Fragile X Society
Rood End House
6 Stortford Road
Great Dunmow
Essex
CM6 1DA
Tel: 01371 875100
Outside UK: 00 44 1371 875100
Fax: 01371 859915
Outside UK: 00 44 1371 859915
Email: info@fragilex.org.uk
Website: www.fragilex.org.uk
The Fragile X Society is a registered charity no. 1127861, Company Registration no 6724061
See also
Research Professionals
Current UK Fragile X Studies
UK Research Reports
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