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"Macula Research Group – Clinical Trials Unit"

About: Sydney / Sydney Eye Hospital

(as the patient),

I had a retinal vein bleed in June 2022. I was recruited to the Macula Clinic Clinical Trial in August 2023 which continued until November this year. 

The diagnosis and finding the underlying causes was disturbing for me as I had pretty good health. However, the support I received throughout the trial helped allay those fears that you have when your body goes awry!

Fortunately I have improved my vision with regular eye injections, something I didn’t even know could occur! There has been no further bleeding or oedema. 

I leave the clinical trial with some trepidation, this service has been a big part of my life for nearly 18 months. Now I enter the real world of the very busy Sydney Eye Hospital clinics. Initially I have opted to see the treating Professor in her private rooms as we work out the way forward now my trial is over. Once I know more regarding my future treatment program I will revert to the public clinics. 

My only comment to the clinical trials team - at no stage did anyone ask me how I felt about what was happening to me. While you concentrate in eyes remember they are also windows to the soul! 

To the Professors and Fellowes, the funding body and all the team at Sydney Eye Hospital thank you. A special thank you to Hong and her clinical trial team for the journey, which you made so much easier for me. I wish you all the very best in your professional and personal journeys! 

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Responses

Response from Pauline Rumma, Director, Clinical Services, Sydney and Sydney Eye Hospital 6 days ago
Pauline Rumma
Director, Clinical Services,
Sydney and Sydney Eye Hospital
Submitted on 2/12/2024 at 10:42 AM
Published on Care Opinion at 10:58 AM


Dear foxtrotkn94,

Thank you for sharing your recent experience being involved in a Clinical Trial conducted at Sydney/Sydney Eye Hospital.

Patients participating in our research studies and clinical trials assists us to find better, more effective treatments. More importantly, it empowers patients to be well-informed of their diagnosis and condition(s) and engaged in their treatment plans.

We are sorry to hear that you did not feel like there was adequate support provided when exiting the trial and transitioning back to public clinics. We appreciate you sharing this with us, and we will be sure to use this feedback to improve the experience of others at the same time point.

We are so pleased to hear that you otherwise found the experience beneficial and supportive. We will pass on your feedback to the Professors and Fellowes, and Hong and her clinical trial team.

Thank you for sharing your experience to the wider community through Care Opinion.

Kind regards,

Dr Pauline Rumma

Director of Clinical Services

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