Information for Patients
Your health information will help us achieve our aim of improving the quality of care provided to patients with multiple myeloma or a related condition.
If your hospital is contributing to the APAC MRDR and you have been recently diagnosed with multiple myeloma or a related condition, clinical or research staff will ask you to participate in the Registry. With your consent, they will collect your health information directly from the hospital medical records and enter it into a secure database.
- Demographic details
- Your physical characteristics such as ethnicity, height, weight and gender
- Your symptoms and laboratory test results such as blood tests and x-rays
- The type of treatment that you receive, your response to treatment, and any other complications of the illness or treatment
- How your health is affecting your quality of life. You will be asked to complete a short, voluntary survey from time to time about this
You can request for your details be removed from the Registry at any time. If you would like to be involved in the APAC MRDR or would like your details removed from the Registry, please contact the APAC MRDR Project Team (firstname.lastname@example.org).
Your privacy is extremely important to us. Your information will only be used for research purposes. We will never release your data to insurers and all analyses and public reports will not contain information that can identify you.
The APAC MRDR has also been reviewed by independent Institutional Review Boards/ Human Ethics Committees.
Your information is securely stored at the Department of Epidemiology and Preventive Medicine at Monash University in Australia. The information is restricted to appropriate hospital staff and research officers who are committed to maintaining confidentiality.