MyHodgkin MyHealth

My Hodgkin My Health (MHMH) – Help Advance Hodgkin Lymphoma Research

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 social impact and longer term consequences of these treatments.

MyHodgkin MyHealth is an innovative App designed to collect vital data on treatment and remission status, and long-term medical issues for patients with Hodgkin lymphoma. This research project has been designed as a mobile App to allow Hodgkin survivors to participate whether at the hospital, at home or on the move. You will be asked to complete a confidential baseline health survey about your Hodgkin Lymphoma, its treatment and any complications that may have arisen after treatment. Thereafter we will ask you to update your data every 6 months on any changes to your health or parenting status.

Why use MyHodgkin MyHealth? · Contribute to a growing database that helps to improve the understanding of Hodgkin lymphoma and its long-term effects.
· Have an impact that has the potential to enhance patient care of patients with Hodgkin lymphoma.

Future of MyHodgkin MyHealth In the future, we hope to use your feedback to further develop MHMH to map the impact of Hodgkin Lymphoma on quality of life, employment and education opportunities.

About Us: Principal Investigators: Dr Nicole Wong Doo, Prof Judith Trotman We are haematologists at Concord Hospital, Sydney, Australia, who are experienced in, and passionate about, providing a platform for patient-derived data and improving the quality of life for lymphoma patients. Through MHMH, we aim to understand the health of Hodgkin patients and use this data to shape and improve Hodgkin therapy.
MHMH is an investigator-initiated research project, with funding provided by the Australian community not-for-profit organization ‘Foundation for a Bloody Great Cause’.

Contact us: For further information visit myhodgkinmyhealth.com. Our team can be contacted at info@myhodgkinmyhealth.com

Further Information: This study has been approved by the Human Research Ethics Committee (CRGH) of the Sydney Local Health District, Australia.

Privacy Policy Respecting your privacy and maintaining the confidentiality of the information you provide is of the utmost importance. This mobile app has been carefully developed with your confidentiality in mind. Information collected about you in this study will be de-identified and stored in a secure database for 5 years after completion of the study. Information will be collected and stored according to internationally recognized best practice ethical principles ensuring compliance with all relevant regulations on data collection and protection of privacy. A report based on the information collected in this study may be submitted for publication, but individual participants will not be identifiable. Future use of Data The data collected in this project may also be used in future research studies or data linkage. The results of this study and de-identified data may be shared in the future with national and international collaborators, any stored data that is used for related or future research, will first be reviewed and approved and approved by an appropriately constituted Ethics Committee. You can indicate your agreement to this on the Participant Consent Form. More information available at myhodgkinmyhealth.com