Hospital Department and Address

Hospital Department and Address

Tel No:

Fax No:

Insert GP’s name and address

Dear Doctorr

Insert patient details

We I write to advise that one of your the above patients has consented to take partcontinued participation in the Tracking Parkinson’s Study (PRoBaND - Parkinson’s Repository of Biosamples and Networked Datasets). The Study is was previously a 5 years long, but is now extended to up to 9 years of observation. Neurological and Parkinson features, and patient questionnaires covering motor and non-motor involvement, are performed every 18 months.prospective observational study involving neurological examination with a focus on Parkinson features, and patient questionnaires covering motor and non-motor involvement.

The Study also involves research-based blood tests for gene testing examining genetics. It is possible that study participants will be found, during this research testing, to have a possible variation or mutation that might be relevant to Parkinson’s. Study participants will be given the option to be notified, by the local specialist clinician, about such a finding. The option to proceed with genetic counselling and/or an NHS gene test will then be offered.for Parkinson’s disease, but the results of this will be used in research purposes and will not be made available clinically (except on rare occasions where there is very young onset Parkinson’s disease and/or a very strong family history of Parkinson’s disease). The Study will also store serum as a biosample for future research projects aimed at identifying a biomarker for the diagnosis and progression of Parkinson’s disease.

Your patient has agreed to take part in this Study –

*as a patient with a diagnosis of Parkinson’s disease within the past three years

*with a diagnosis of Parkinson’s disease made under the age of 50 years

*as the close relative of a patient with Parkinson’s disease.

(*delete as appropriate)

For patients with Parkinson’s disease, there will be visits approximately every 6 months for a 1 to 3 year period that will be combined with standard hospital visits wherever possible. For relatives of patients with Parkinson’s disease, there are two visits, at baseline and three years later.

Further details about this Study are available on the website www.proband.org.uk or by contacting us, or from the coordinating centre in Glasgow. Margaret CrawfordAlison Smith is the Study Co-ordinator, and is based at the Neurology Department, Southern GeneralQueen Elizabeth University Hospital, 1345 Govan Road, Glasgow G51 4TF. Tel No: 0141 232 7846201 2486. Dr Donald Grosset is the Chief Investigator, and is also based in Glasgow. He can be contacted via Margaret CrawfordAlison Smith.

Yours sincerely

Name

Designation

Version 1.21 16/12/201127/06/2016