Sign up for our News Alerts

 


Find us on

Research Policy

Unique is happy to consider any proposals for research collaborations but asks researchers to please consider our policy and principles guidelines below before contacting us. We have worked with many different research teams over the years and generally have a good response from our membership to invitations to participate in research programmes of high quality.

If you wish to work with us, then please contact Dr. Beverly Searle, our CEO, on beverly@rarechromo.org in the first instance.

Unique Policy and Principles for Potential Research Collaborations
Notes for researchers

Unique requests from you:

1.Details of any ethical approval you have received from suitably accredited internal and/or external bodies
2.Details of your research proposal
3.A family-friendly information sheet explaining to families the aims of your research.
4.An open letter to families explaining:
a) how they could be involved in your research,
b) what, if any, benefits or drawbacks there would be to the families or their affected child
c) that they are free to withdraw from the research programme at anytime without giving a reason,
d) that their child's treatment would not be affected by taking part in, or withdrawing from, the research.
5.Information on what samples would need to be taken (e.g. blood, buccal cells), who would take the samples, how they would need to be despatched to you etc., who would pay for families' necessary expenses
6.A promise to thank participating families and to keep the families informed of progress (or lack of it) made in your research there is nothing more dispiriting to families than to go to the trouble and distress of having samples taken and then not to hear anything further from the researchers.
7.Where possible, co-authorship of any published papers arising from work in Unique samples/families or at the very least an acknowledgement in published papers of the help given by Unique, along with the group's contact details.
8.Wherever possible, financial assistance to Unique to cover the administrative costs incurred in helping with the research project.

Unique will:

1. Present items from points 1 to 5 above to our own internal Research and Ethics Committee to comment on and approve. The committee might come back to you to suggest how your application can be made more family-friendly
2. If ethical approval is given by this committee, Unique will act as conduit, contacting relevant families to see if they would like to participate in the proposed research and passing on to families information as itemised above
3. At no time will Unique pass on directly to researchers or other outside individuals or organisations the confidential contact details of any of our member families; initial contact between researchers and families will be under the control of families themselves.
4. Anonymised summaries of information held on Unique's database may be given to research groups, at Unique's discretion, but access to individual family's confidential records will always be denied.