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Are you a patient with Hodgkin lymphoma, either now or in the past?
If so, join us to test the MyHodgkin MyHealth App to improve understanding of the long-term consequences of Hodgkin lymphoma treatments.
Long-term survival rates for people diagnosed with Hodgkin lymphoma are better than ever, but with significant changes to treatment over the last decade, more information is needed to further understand the longer-term consequences of these treatments.
MyHodgkin MyHealth is an Australian lead research project designed to collect vital data on lymphoma treatment, remission status and medical issues including fertility for patients living with Hodgkin lymphoma. The MyHodgkin MyHealth research project has been designed as a mobile App to allow Hodgkin survivors to participate whether at the hospital or clinic or at home. You will be asked to complete a baseline health survey which will ask details about your disease, its treatment and any complications that may have arisen. We are particularly keen to capture fertility issues and children conceived after treatment. Thereafter we will ask you to update your data every 6 months to confirm your ongoing health, or any changes to your health or parenting status.
| Step 1 | In the first step, we aim to recruit Australian Hodgkin lymphoma patients to the MyHodgkin MyHealth project, to demonstrate the feasibility of this research. Some key metrics include the number of people who download the App, and the number who stay engaged over a 6-month period. |
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| Step 2 | If we are successful in step 1, we will start international recruitment to MyHodgkin MyHealth, co-led by Hodgkin lymphoma doctors and patients. International recruitment is essential to build a large enough database to provide meaningful real-world information. |
| Future steps | If steps 1 and 2 are successful, we plan to enquire about other important issues such as quality of life. |
Principal Investigators: Dr Nicole Wong Doo and Professor Judith Trotman
We are haematologists at Concord Hospital, who are passionate about improving the quality of life for lymphoma patients. Through MyHodgkin MyHealth, we aim to understand the health of Hodgkin lymphoma patients from their own perspective and use this data to shape and improve Hodgkin therapy.
MyHodgkin MyHealth is an investigator-initiated research project, with funding provided by the community-driven not-for-profit organisation ‘Foundation for a Bloody Great Cause’.
Download the MyHodgkin MyHealth App and create an account today – simply open the App Store or Google Play Store and search ‘MyHodgkin MyHealth’.
Together, we can make a difference!
Our App has been created with a non-expert in mind. The interface is easy to navigate, there are clear instructions provided throughout the questionnaires with helpful tips ⓘ to guide you. The App can be downloaded from Google Play or the App Store across different devices (iPad/tablet/phone).
Your data will be encrypted using industry-standard practices and sent to Amazon Web Services databases. To ensure confidentiality, information that identifies you is stored in a separate database to your health questionnaire information. The only code that links your identify to your health information is available to senior research investigators only. This ensures that, in the event of any breach of data, your health information will remain anonymous and cannot be traced back to you. This process complies with legal and ethical guidelines. For analysis, your data will be downloaded onto password-protected computers within Concord Hospital, Sydney Local Health District, and treated in accordance with National Health and Medical Research Council (NHMRC) guidelines.
You can start entering data as soon as you start your treatment. We recommend you update the data after you have completed your initial treatment. You will receive reminders every 6 months to continue these updates.
Yes, we are very keen for any patient treated with Hodgkin lymphoma to enter their data even if it was decades ago. Treatments for Hodgkin lymphoma are evolving and changing, and one of the goals of this project is to map changes in the long-term health outcomes over time. If you were treated many years ago you may not remember your treatment details very well but we will be mindful of the recall challenges of distant data.
Results will become available in the form of Haematology conference abstracts, journal publications, and communicated to you by email in study newsletters.
If you are unsure about your treatment, we recommend making contact with your doctor to confirm or clarify your treatment. We suggest you start by making your best guess about the treatment and number of cycles you had. The options in the drop-down menu might help you remember. You can then download and print out your PDF "MyHodgkin MyHealth Summary" to show your treating doctor. Ask your doctor for a summary of your treatment so you can compare with your recollection. You can return to the MyHodgkin MyHealth App and edit your entries when you have confirmed your treatment details.
The MyHodgkin MyHealth App is a pilot study across Australia only. We are keen to improve and enhance the App before we go global. To help us continue making improvements, please share your feedback through the App itself or via email to info@myhodgkinmyhealth.com
Yes. You can download a PDF copy of your answers directly from the left-hand menu in the App under the heading “My MHMH Summary”. Please note the PDF is password protected.
You can view a copy of the patient information sheet/signed consent form anytime from the left-hand menu under the heading “View Consent”.
During this Pilot study, the App is only available in English. Additional languages will be available when we go global.
There is no cost. Your contribution to this research is completely voluntary and the App itself is free!
No, this is not the purpose of the App. We have no connectivity to your health records.
Yes, you can still edit your information after you have submitted it.
Please contact the MyHodgkin MyHealth team at info@myhodgkinmyhealth.com
This study has been approved by the Concord Hospital Ethics Review Committee in Sydney Local Health District, Australia. If you have any concerns or complaints about the conduct of this study, please contact the Executive Officer on 02 9767 5622 and quote protocol number 2022/ETH02150.
Endorsed by: The Australasian Leukaemia & Lymphoma Group and Lymphoma Australia.