Request for Patient Feedback Multimodality investigation of visual recovery in compressive pituitary tumours We would like to receive your feedback on a proposed research study involving patients with pituitary tumours. Aims of the Study Patients with pituitary tumours experience visual failure because of the pressure these tumours exert on the optic nerves. Recovery after surgery is variable and is dependent various interacting mechanisms. This research aims to utilize novel Magnetic Resonance Imaging (MRI) techniques to measure changes along the visual pathway. This study aims to develop these non-invasive imaging techniques to quantify changes seen in the optic pathway during visual recovery in order to identify the reversible and irreversible factors associated with visual failure in these patients. This will provide clinicians with the evidence to be able to confidently advise patients about the optimum timing of treatment and will aid in counselling patients as to the likelihood of visual recovery following tumour resection. Patient Participation The total duration of involvement in the study will be approximately 6 months. As part of the study each patient will be assessed on 4 occasions. Each assessment involves a series of eye tests and one MRI scan. In total, the eye tests will take around 40 minutes and the MRI scan will take up to 90 minutes. All study assessments will be in addition to the usual clinic appointments patients have with their treating Consultant but the research team will try and arrange these on the same day as other hospital visits. The surgery patients undergo will not change if they choose to participate in the study and their outpatient follow-up arrangements will also remain unchanged. Patients will be assessed once before surgery and 3 times after surgery. The first assessment will be performed 2 days after surgery whilst patients are still in hospital and further assessments will then be arranged as an out-patient at 3 and 6 months postoperatively. Patient Involvement Request Date of issue: 15/12/2014 Version 1.0 REC Reference No: 13/EE/0414 Page 1 of 3 Request for Feedback We are very interested in any feedback you may have regarding this study. In particular we would welcome your comments concerning the following aspects of the project: 1. Do you feel that this is an important area to research? 2. Is the level of expected patient participation reasonable? 3. If eligible, would you be prepared to participate in the study? Please complete our brief survey at https://www.surveymonkey.com/s/7FHJL5V or alternatively you can email your comments to pituitaryvisionstudy@gmail.com. The Principal Investigator for this study is Mr Stephen Price, NIHR Clinical Scientist and Hon. Consultant Neurosurgeon and is based in Cambridge. The Researcher involved in the study is Mr Jonathan Shapey. Further information If you would like more information about the study, please do not hesitate to contact the research team by phone (01223 746455) or email pituitaryvisionstudy@gmail.com. If you have a concern about any aspect of this study, please contact the research team. Please contact the Department of Neurosurgery, at Addenbrooke’s Hospital, Cambridge and ask to speak to Mr Stephen Price (Principal Investigator) or Mr Jonathan Shapey (Researcher). Alternatively you can contact Jackie Williams who is the clinical nurse specialist for endocrine and pituitary disease at Addenbrooke’s Hospital on 01223 348749. Further advice may also be sought Patient Advice and Liaison Service (contact details listed at the end of this document). Thank you very much for taking the time to read this information and we look forward to receiving your comments. Yours sincerely, Mr Stephen J Price Principal Investigator Mr Jonathan Shapey Research Fellow Patient Involvement Request Date of issue: 15/12/2014 Version 1.0 Dr Mark Gurnell Consultant Endocrinologist REC Reference No: 13/EE/0414 Page 2 of 3 Contact details If you require any further information regarding the study please feel free to contact any of the following people: 1. Principal Investigator Mr Stephen J. Price NIHR Clinician Scientist and Hon. Consultant Neurosurgeon Department of Clinical Neurosciences Box 167 Cambridge University Hospitals Cambridge Biomedical Campus Cambridge CB2 0QQ Tel: 01223 746455 2. Researcher Mr Jonathan Shapey Research Fellow Department of Clinical Neurosciences Addenbrooke’s Hospital Cambridge Biomedical Campus Cambridge CB2 0QQ Tel: 01223 274295 3. Clinical Nurse Specialist Ms Jackie Williams Clinical Nurse Specialist for Endocrine/Pituitary Disease Department of Endocrinology Cambridge University Hospitals Cambridge Biomedical Campus Cambridge CB2 0QQ Tel: 01223 348749 If you wish to formally complain about any aspect of the study further advice on how to do so may be sought from the Patient Advice and Liaison Service (PALS): Box 53 Cambridge University Hospitals Cambridge Biomedical Campus Cambridge CB2 0QQ Email: pals@addenbrookes.nhs.uk Tel: 01223 256170 Patient Involvement Request Date of issue: 15/12/2014 Version 1.0 REC Reference No: 13/EE/0414 Page 3 of 3