GENERAL INFORMATION FOR PATIENTS
Patients diagnosed with aplastic anaemia or an IBMFD at hospitals participating in AAR are eligible to be included in the registry. There is no age restriction to be a part of the AAR, both adult and paediatric populations can be included.
To find out if your hospital is participating in AAR , please visit the Participating Sites tab.
Participation is voluntary and you can leave the registry at any time (see “Opting-out of the Registry” section below) without affecting the treatment or care provided to you.
The following information is routinely collected in clinical care and will be provided to the registry database:
- Name and date of birth
- Medical history and current health status
- Diagnosis and treatment details
The information and details collected will never be released and only used in a de-identified (anonymous) format for research purposes.
OPTING-OUT OF THE REGISTRY
It is important to note that the registry uses an opt-out participation model. Your clinician will discuss the registry and provide brochures that outlines the AAR. Your details will automatically be included in the registry unless you let us know that you do not want to participate. Participation is entirely voluntary and you can choose to opt-out of the AAR at any time, without incurring any out-of-pocket expenses, or affecting the level of treatment or care you are provided with.
To opt out of participating in the AAR, please contact us at 1800 811 326 or on email@example.com. We may ask for your name, date of birth and the hospital you are being treated at, so that we can inform your clinician that you have opted-out of the registry and to ensure no further details about you are entered into the AAR.
If you are willing to allow your data to be included in the AAR you are not required to do anything further. Should you decide to take part but later change your mind, you are free to withdraw at any time.
What is the purpose of this research?
Information collected in the AAR will provide an important resource for medical researchers investigating the causes of aplastic anaemia and IBMFS in developing new treatments. It will also allow hospitals to benchmark their practices and outcomes against other hospitals in Australia. These factors will help to ensure the best possible care is provided to patients with aplastic anaemia.
What are the possible risks?
There are no foreseeable risks associated with the registry as this is an observational study and does not affect your clinical care or treatment in any way.
Can I access information about me?
The AAR will, on request, provide you with information we hold about you. Unless there is an exception under relevant privacy laws, we will provide you with a printout of your personal information within 30 days.
We request that you identify, as clearly as possible, the type(s) of information requested to assist us in meeting your request. We may charge you for reasonable costs that we incur in supplying you with this information.
Is this study a clinical trial?
No, the registry is not a clinical trial. Participation in the registry does not change your clinical care or treatment. However, we are currently conducting a clinical trial called DIAAMOND.
What does participation involve?
Involvement in the registry does not change your clinical care or treatment in any way. Your clinician or a member of their staff will provide you with information and an AAR brochure at the time of your diagnosis or one of your follow-up consultations. They will then ask if you would like to participate before your details are entered into the registry.
If you are happy to participate, your details will be added to the registry. Even after you have been included in the registry, your details can be removed at any time at your request, without any consequences to your treatment or care.
Do I have to take part?
No, participation in the registry is voluntary and there will be no consequences for your treatment or care if you choose not to take part in the registry.
Is this research project approved?
Yes, the Aplastic Anaemia and Other Bone Marrow Failure Syndromes Registry is approved by the relevant Human Research Ethics Committees for each participating site.
What are the possible benefits?
The benefit of participating in the AAR is to allow us to learn more about aplastic anaemia and inherited bone marrow syndromes. Currently there is little Australian data on the incidence and prevalence of these diseases, the therapies utilised or clinical outcomes. Information obtained from this registry will be an invaluable resource and will assist to improve clinical outcomes and to discover further treatment options which may improve outcomes.
Outcomes of the project may also enable improved management that could benefit some of the participants as well as future patients with aplastic anaemia and inherited bone marrow failure syndromes.
What will happen to my information?
We use your personal information to enable us to conduct or promote research into improving the management of aplastic anaemia. Results of our research activities may be reported back to the medical research community but are always presented as non-identifiable summary data to protect the identity of patients.
We take your privacy seriously. Personal information is only accessible by authorised AAR personnel or authorised service providers who use the information to administer the business of the registry.
In terms of privacy
The AAR has been designed in accordance with the strictest privacy principles, including State and Commonwealth privacy laws, and has been reviewed by independent ethics committees from hospitals around Australia.
We are committed to ensuring the privacy and confidentiality of your personal information. We take all reasonable steps to protect the personal information we hold and protect it from misuse, interference, loss, and from unauthorised access, modification or disclosure.
No identifying information about patients will ever be released to any third party (except in the very rare case of a court order) and hospitals will only be able to view the details of their own patients.
FURTHER INFORMATION ABOUT APLASTIC ANAEMIA AND BONE MARROW FAILURE SYNDROMES
Types of Bone Marrow Failure Syndromes – MRV
Aplastic Anaemia – Leukaemia Foundation
The Aplastic Anemia and MDS International Foundation