Research Access to the Encephalitis Society’s Non-Financial Resources

Guidelines & Information for Applicants

Application Forms and Guidelines are revised annually. It is the responsibility of the applicant to obtain and use current material.

Research Requests

The Encephalitis Society regularly receives requests from individuals, organisations and internal colleagues wishing to access our contacts for research purposes. It is our intention to co-operate as far as possible with these requests providing they fall within the Society’s own aims and objectives, will not be detrimental to our Users and will contribute to our achievements. The Encephalitis Society also needs to be satisfied that the research does not compromise the Society. We welcome all research which strives to improve the quality of life for people affected by encephalitis.

What Resources are Available

The Encephalitis Society has a database of over 3,000 people affected by encephalitis plus family members and carers. The Encephalitis Society also reaches people affected by encephalitis via it’s Website . It may be possible to use these facilities to invite people to participate in research projects.

Access to Data

The Encephalitis Society holds its contacts in the highest regard, and is very aware the number of times each individual is contacted annually should be carefully regulated. Therefore, access is at the Society’s discretion and will be based upon a desire not to abuse the goodwill of our members). Please be aware that this may impact on the access available.

Data Protection Act

In accordance with the Encephalitis Society’s Data Protection policy, we are unable to release contact details of our contacts directly to a third party. This means that the Encephalitis Society would undertake, on the researcher’s behalf, any mailout, telephone survey email contact etc. needed for the project. Please be aware there may be a charge for this service.

Research Assessment Application Form

In order to ensure any proposed research is bona fide and intended for the ultimate benefit of people affected by encephalitis, the Society requires that all requests for research access to its resources should be approved by our Research Sub committee. An Application Form is enclosed on which you should provide an outline of the aims and objectives of your research, along with any other documentation as requested. You will also be required to provide details of an academic or professional referee. In addition, if your research needs Ethics Approval please attach a copy of this documentation.

Application for Research Access

Fees

The Encephalitis Society reserves the right to charge a fee for access to its resources, based on the costs of fulfilment, plus an administration fee.
Research Mailout Costs

Outcomes and Usage of Research

The researcher will provide the Encephalitis Society with a copy of the findings of the research project, a 250 word summary suitable for a lay audience, and copies/PDF’s of any publications that originate from the study . The Society claims the right of access to the findings of the research project. The researcher, when publishing and dissemination their findings, should make written or verbal acknowledgement of the Encephalitis Society. The Encephalitis Society reserves the right to use the findings for its own publication and research purposes.

If you would like further information, please contact Elaine Dowell Research

Research Mailout Costs

Documents to be sent out	Pages to copy and collate 2-4	Pages to copy and collate 5 - 10	Pages to copy and collate 11 - 25	Sourcing participants. Producing labels and covering letter. Packaging
50	£15	£25	£50	£40
100	£25	£50	£100	£60
200	£50	£100	£200	£80
Postage to be paid as per weight