What is the SMA Registry?
The SMA Registry is a database set up to collect, store, retrieve, analyze, and share information on individuals—both children and adults—diagnosed with spinal muscular atrophy (“SMA”). In this current phase, data shall be obtained directly from patients and families.

What is the purpose?
By providing a view of the people affected by SMA in Malaysia, to follow the progress over time and track and document the prevalence and progression of SMA, we can provide information that is valuable to create opportunities for research and clinical trials, support access to drug therapies and treatments, and improve the standard of care for SMA in Malaysia. Knowing the real life impact of SMA across our families is useful data that can be presented to policy makers to persuade them to make the changes we need to have better well-being.
A registry is a crucial step towards finding treatments and cures for any disease. One immediate goal for the SMA Registry is to provide information needed by doctors, our government, and pharmaceutical companies, to evaluate the access and reimbursement for disease modifying treatments for SMA in Malaysia.

How is this developed?
The SMA Registry serves as an organized system, with uniformly formatted information based on TREAT-NMD’s registry for SMA. The TREAT-NMD Alliance is organised as an independent, non-profit consortium of interested parties who work together to support therapy delivery in neuromuscular diseases.
Persatuan WeCareJourney is a TREAT-NMD Alliance Member Organization and we agree to work with the Alliance to further advance the aims and objectives of the Alliance.

Who else is engaged to help run the SMA Registry?
Dr Tay Chee Geap, a paediatric neurologist, is part of the team to establish, run and maintain the SMA Registry.
Persatuan WeCareJourney will be responsible to cover any costs and also provide secretariat services. We also engage on an ongoing basis with Clinical Research Malaysia and relevant pharmaceutical industry partners in Malaysia and Asia.

Who can participate to enter data?
This is open to all Malaysian citizens and residents who are affected by SMA, or their parents or care-givers. Data will be collected online, and where possible also through participant meetings.
The database gathers demographic information such as date of birth and residence etc, and some basic medical information about individual patients including family history and ongoing medical events. You will be asked to update the information from time to time.
The registries will be de-identified, so the patient’s name, address, and other information that may identify the patient is coded and unavailable to researchers. We will provide you a copy of your data every year, or upon request with reasonable notice given up to 4 times a year.

To participate, you can click the link for Self Report Form below to start answering questions in the google form. You can choose to answer in Malay or English version. All data will be stored in a secure drive account.
Malay version-https://forms.gle/auKue5xFhBbXYMnw8
English version-https://forms.gle/yVE8ws9Ci4NdHFbS8

Is there a Scientific Advisory Committee?
Dr Tay Chee Geap is one of the scientific advisory committee. We intend to invite other interested professionals.