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.
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
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Pages to copy and collate
2-4
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Pages to copy and collate
5 - 10
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Pages to copy and collate
11 - 25
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Sourcing participants. Producing labels and covering letter.
Packaging
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Postage to be paid as per weight
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