Dr. Daniel Fernandez talks about the process of construction and consolidation of the PANLAR guidelines and the challenges for the Research Unit.
EF: Hello, everyone, and welcome to a new Global Rheumatology video blog, where we will be reviewing the PANLAR guidelines presented at PANLAR 2022. We are with Dr. Daniel Fernandez. Doctor, welcome.
DF: Hello, Estefania. Nice to be with you and the entire Global Rheumatology audience.
EF: Doctor, initially, let's talk about the Research Unit and what has been developed. Everything that has been evidenced in PANLAR 2022.
DF: Of course, the Research Unit has been growing since its inception in 2019 at PANLAR in Quito. It was when the presidency of Dr. Enrique Soriano decided to start this collaborative work to promote research in PANLAR.
In this PANLAR in Miami, we presented advances of what we have been working on from the Research Unit with Dr. Lorena Brance, the person with whom we have been forming a team that is leading and promoting research in all the countries of the League.
So, our idea is to be able to carry a message of integration in each of the countries so that the ideas we may have, which may be a local idea in one of the countries, can be taken to other regions to hopefully carry out collaborative research and develop new research projects that will take us forward in this topic at a regional level.
EF: How were the new psoriatic arthritis guidelines constructed?
DF: Psoriatic arthritis is a very important disease. Of importance, not only in the Americas but throughout the world. Management guidelines have come out. We recently had the GRAPA guidelines published in Nature Review Rheumatology, the 2019 guidelines, but not unrelated to this, and understanding these new guidelines that have been coming out recently from PANLAR, and we have decided to work mainly with experts from all over the region.
In the development of guidelines, and in this case, psoriatic arthritis was the one we have developed most recently, and it is a guideline that we worked on from the Research Unit as the coordinator and with a group of experts from all over the region. We use the GRADE methodology, a worldwide validated methodology that allows us to search for the central guides that are published at the moment, to qualify them according to their quality, to choose a source guide, which in the case of the psoriatic arthritis guide, was the EULAR 2019 guide and from that, the experts evaluate the recommendations they have and define if those recommendations already answer all the questions they may have from this group of experts for the local guide. They are asked if new questions are asked, and we take advantage of this literature search in the source guide. To use this GRADE methodology, to reduce a little bit the costs and time involved in the development of the guide, we used this methodology and worked together with a group of experts from all over the region and developed recommendations; some came from the source guide, and others were adapted, and some new ones were made, and after that, we built a document, a series of recommendations and an algorithm that we presented at PANLAR in Miami.
At this moment, we are already in the final phase, which is to finish the manuscript of the last article that will be submitted to an international journal in the English language, and in that way, we can be, hopefully, by the end of this year, with the publication of our first guide of arthritis, psoriatic arthritis of PANLAR.
EF: How are we different from the existing guides you have just mentioned from other societies? Also, do we differentiate ourselves, or do we have differential analyses as a region?
DF: Of course, Estefania. Some particularities are concrete to our region and are not familiar to the region. We have specificities in each Latin American country, and PANLAR also includes the United States and Canada, so they are different countries with diverse populations. In general, we have some particularities in terms of access to certain medications, their cost, and our patients' characteristics that can make specific recommendations within the management guidelines. Requests can be made in one direction or another with some medications. So, it is very important that consider both the heterogeneity of the disease because psoriatic arthritis is a heterogeneous disease, as well as the particularities that our patients and also our health system may have. It is necessary to have local guidelines.
When I say local, I am referring to the region of the Americas that may be different in that sense, then in the applicability in the available resources and the experience.
Because finally, the experts who have gathered to make these guidelines also contribute very important aspects of their experience, although the recommendations and management guidelines are based on scientific evidence.
The important aspect of these guidelines is that evidence is grounded in reality, thanks to the participation of the experts who were part of the group that developed our psoriatic arthritis guidelines.
EF: Will this change or allow for improvements in treatment for the population?
DF: Yes, I believe that this allows us to ground this evidence in the reality of each country. We saw this in the exercises we did. We have been doing this work for a little over a year and always zoomed in. This was virtual work because of the pandemic situation. We met all the experts personally in Miami at PANLAR, so this collaborative work allowed us to identify some particularities that we had in some of the countries in terms of access and practice and allowed us to generate a series of recommendations that will enable physicians in their countries to define specific therapies or specific therapeutic behaviors based on the guidelines. But I insist, grounded in the local reality of a given country that should be grounded in the local reality of a region that, although heterogeneous, has common characteristics in terms of access to medicines and their availability in a health system that, as always happens, health systems have needs that tend to infinity. Still, resources will always be finite; therefore, grounding this evidence in daily practice and reality is what a management guide such as the PANLAR psoriatic arthritis guide aims to do.
EF: How was the process of different countries in the research in general? And I say this not only for the topic of the guide. I am talking about it as a PANLAR research unit.
DF: It has been a very interesting process, a learning process. People and different cultures within the same region. This is a process in which the Research Unit looks for questions and research questions, and once we identify specific questions, we look for study groups within PANLAR that may be interested in answering those questions in a general way but also in a particular way for their countries. So, the articulation that we have been leading of the PANLAR Research Union seeks for the Unit to become an axis around which the different experts, the PANLAR study groups, can revolve and work together, not only in the aspect of rheumatological technical knowledge but we can also work with the support that we give from the Research Unit, from the methodological point of view.
And, very important with a tool that I would like to take the opportunity to comment on here in this interview, Estefanía, so that all the Global Rheumatology people and those who are part of PANLAR several of them can also take it into account. We are moving forward with several registries, like the description of people or patients with certain conditions, and, during the last year, we have been working so that PANLAR would have access to a tool called REDCap.
It is a tool for capturing and storing information for research, so one way to articulate our experts throughout the region is to have a common mechanism for capturing data because usually, people used Google Forms or used an Excel sheet and upload it to a drive, each one uploaded their data. Now for the Research Unit and PANLAR in general, we have access to PANLAR's REDCap that will allow researchers to facilitate the processes that will bring them the information, capture it, and the subsequent procedure to process and analyze it.
The collaborative work goes from this issue of having software at our disposal to articulating and contacting our experts throughout the region.
EF: This is very important, and to know what challenges remain after you tell us about a Research Unit and the topic of the guidelines.
DF: Our challenge is undoubtedly to advance in our active registries. We now have an active registry of Janus kinase inhibitors, a real-life study projected for three years that we are also leading from the Research Unit with the support of Dr. Enrique Soriano. And what this work seeks to do is to evaluate the profile of the patients who use this type of drug for rheumatic diseases, and it is a challenge for us to keep the registry active and to keep the people working hard and entering patients on that side of the registry.
With other registries, we are thinking and working on creating new registries. A registry on vasculitis, autoimmunity, and pregnancy and a registry on eye diseases in rheumatology, and this way, allow us to know what our patients are like because it is the only way to know if our patients and the conditions that we rheumatologists in Latin America handle may have certain particularities. And the subject of the guidelines, well, at this moment, we already have the psoriatic arthritis guideline, the axial spondylarthritis guideline, and three vasculitis guidelines that are also already finalized, and one of them has been submitted to a journal. The other two are being reviewed, and we have three management guidelines for 2022 and the remainder of 2023, which are the management guidelines for rheumatoid arthritis, juvenile idiopathic arthritis, and osteoporosis, which are already on their way that we expect to work throughout the following year. So, there is a lot of work and expectations and many desires that many more people continue to be encouraged to research, and we understand that, in practice, it is complex. The rheumatologist has many occupations, has many patients. Still, we want the rheumatologists of the United States from PANLAR to be encouraged to advance research and to be able to take a little further, at a higher level, the practice of Rheumatology applied to research.
EF: Doctor, thank you very much for this space and success in all the challenges the Research Unit must face and share.
DF: Thank you, Estefania. It is also a pleasure to have Global Rheumatology as an essential instrument for PANLAR and for us to be able to carry this information and to be able to disseminate the products to everyone
