Research
Turner Register
Aim
The British Society for Paediatric Endocrinology and Diabetes aim to establish a national register of young women with Turner Syndrome. The register would be used to monitor the provision of medical care for patients with Turner Syndrome in adolescence and adulthood.
Trial status
An ethics amendment has recently been approved to allow subjects aged 16 and over who attend paediatric clinics to self refer themselves directly to the register without going through their consultant. This self referral registration route is already available to subjects attending adult clinics.
The register is an ongoing project. Currently there are 71 women on the register. Subjects on the Register are being followed up annually to monitor the provision of their medical care.
There are two ways for patients to join the register:
1. Self referral to the Register:
For women with Turner syndrome who are aged 16 or over.
For women with Turner syndrome who are aged 16 or over.
| Stage 1 Documents for women with Turner syndrome to read or complete: | ||
|
Letter to participants | (doc) (94kb) |
|
Study Information leaflet | (pdf) (281kb) |
|
|
Consent Form | (doc) (94kb) |
|
|
Patient Questionnaire for Annual Follow Up | (doc) (127kb) |
| Stage 2 Documents for clinicians: | ||
|
|
Protocol | (doc) (449kb) |
|
|
Covering Letter to Paediatrician | (doc) (53kb) |
|
|
Paediatrician Datasheet | (doc) (120kb) |
2. Referral by Paediatrician:
For paediatric consultants who wish to refer their patients to the Register.
For paediatric consultants who wish to refer their patients to the Register.
| Documents for clinicians to view only: | ||
|
|
Protocol | (doc) (449kb) |
|
|
Paediatrician Datasheet | (doc) (208kb) |
|
|
Information leaflet *not for use without R&D approval | (pdf) (35kb) |
|
|
Consent Form *not for use without R&D approval | (pdf) (18kb) |
|
|
Letter to GP *not for use without R&D approval | (doc) (48kb) |
Turner Register poster for display in clinics (pdf)(228kb) If you would like to display the poster it requires your hospital's R&D approval please contact us and we can arrange this at: as336@medschl.cam.ac.uk
For more information please contact the BSPED Clinical Trials Audit Group Office at: as336@medschl.cam.ac.uk or telephone 01223 769386
