What is the SA CF Registry Project?
Health professionals are teaming up with the SA cystic Fibrosis Association (SACFA) to establish a registry (or database) of people living with CF in SA in line with international practice. The registry has been launched in 2018 and will aim to collect medical and related information on people with CF on an ongoing basis.
What information is collected for the CF registry?
Medical information obtained through routine medical care of your (or child’s) CF will be collected and updated an annual basis. No additional tests are needed other than what your doctor normally requests. Information relating to how and when CF was diagnosed, your (or child’s) CF genes, sputum tests, lung function, nutrition status, complications and treatments you receive will be collected.
What are the benefits to you (or child) and the CF community of establishing a registry?
Keeping up to date data and statistics on the health of people with CF is important and useful for many reasons including:
- Monitoring overall health outcomes and trends in CF care in order to detect deficits or areas of care that need intervention. By comparing our data to international trends, we can identify gaps in CF care that need more attention.
- Keeping accurate statistics in SA will help us advocate for CF care to government and medical aids.
- Planning and conducting research which will benefit the CF community, including identifying individuals who may be eligible for clinical trials of new treatments.
How will confidentiality and your (or child’s) data be protected?
The registry database will be stored on a secure server hosted by the University of Cape Town and access to the database will be tightly controlled. No personal or identifying information will be visible to users who have access to the database.
What measures have been taking to respect your or your child’s right to participation?
The SA CF registry project has been approved or is in the process of being by research ethics committees affiliated to universities throughout SA. Signing up to the registry is entirely voluntary and you have the right to withdraw at any time without stating a reason. We request everyone (adults, parents and teenagers) who agrees to sign up to the registry to give us your written signed consent.
Please ask your doctor or CF clinic at your next checkup about how to sign up to the CF registry if you wish to participate, or contact Dr M Zampoli (firstname.lastname@example.org) for more information.