The World Apheresis Association (WAA) serves as an umbrella organization representing, at present,18 national or regional societies throughout the world. The current membership is shown in Table 1.
Table 1World apheresis membership.
The WAA was formed in 1985 and had its first international meeting in Japan in 1986. One of the earliest undertakings of the organization was to establish an international data registry which would be open to all groups with the hope of having a widely representative sampling of information from around the world.
At the present time, both national and regional registries contribute data and the organization is looking forward to the continued expansion of the database to include the opportunity to gather data on new technologies such as CART cell use and to further enhance the information on the applications of photopheresis technologies.
The Canadian Apheresis Group was the first national organization to establish a registry. This was done because, in the early days of apheresis in the 1970s and 80s, little data was available in the published literature concerning plasma exchange procedures. People were interested in what their colleagues were doing and how they were doing it. It was important to know what diseases were being treated and if there was any real advantage to such treatments. It was also of great interest to know what reactions were encountered and why what was she was best for work procedures.
In Canada there was a particular driving factor in that it was early recognized that if plasma exchange was effective in treating breast cancer and rheumatoid arthritis, two procedures for which plasma exchange was being toted as a reasonable therapy for these diseases at the time, we would use all of the plasma collected in the country for no other purpose. Thus, the question arose as to the effectiveness of these procedures and the federal government was requested to help in obtaining information regarding potentially effectiveness because of the major concern of the security of the blood system in the country. In Canada, while medicine is practised on a regional i.e. provincial basis, a few areas such as those related to security of the national blood supply fell under the auspices of the federal government.
At that time, there was only a small number of physicians actively involved in apheresis in our country but all were interested in trying to see if there was an opportunity to identify specific patient groups where the numbers would allow the collection of data in sufficient amount to verify efficacy, or equally important, none of this labor- intensive and expensive new therapy.
There are now 42 national centers in this country with only a population of 38 million but by worki the CAG has produced 44 joint publications, 15 of them on TTP. Using the registry data and as new centers set up they are able to learn from the old ones through the registry and we share experiences between centers. Our data is reviewed and discussed at our annual meeting each year. This process allows us to determine what, if any, opportunities exist for pilot projects to establish the feasibility of further work or actual RCTs.
The same opportunities have been recognized by many organizations throughout the world. A recent survey of WAA member societies by the operations office has shown a considerable number of regional or national data bases (Table 2) with many more established only on a local or regional basis (Table2.).
There are many benefits to patients in establishing registries and having communication formalized between centers. An excerpt from a recent patient letter is an example of the perceived advantages.
“I am an apheresis patient and as such depending on my weekly Lp (a) apheresis. I currently live in Berlin and have found a center.
However, as an expat being reposted by my employer world wide every couple of years, I find it extremely hard to find apheresis centers world wide.
As the WAAs mission is also exchanging information, I was wondering if a list of apheresis centers for Lp (a) treatment exists in order to find centers and then be able to convince my employer to post me accordingly.
Maybe a database could be started and addressed at the upcoming congress. It would help highly mobile employees to cope with a not so mobile medical condition.
Additionally, there is, of course, a benefit to patients in the new start-up centers as the operators there are able to learn from the expertize and knowledge of the more established practitioners.
Moving forward, the WAA registry hopes to expand activities with more centers and more topics. We welcome the participation of our members and would appreciate any input as to how to improve the database going forward. To “Apply for Access’ and get ‘Username’ and ‘Password’ go to the homepage at: https://waa-registry.org.
Let us hear from you: waa.worldapheresis.org.
Published online: December 14, 2022
© 2022 Published by Elsevier Ltd.