Paula Sanchez Deese, Medical Group Coordinator, who studies Stubborn Covid.
Spanish scientific companies want to gain more scientific knowledge c:stubborn egg to be able to provide better medical care for a pathology that is already a reality. For that until! 56 medical entities with multiple specialties gathered to solve the identification of genetic and biological symptoms, to establish care protocols, to develop special training.
Work surrounded by uncertainty, coordinated by a researcher of population genetics, a biologist specializing in forensic examination, Paula Sanchez says: in an interview Medical record reveals the status of this still anonymous project, which seeks to formulate immediately to begin producing knowledge when its design phase is complete.
What stage is the project at?
We had a meeting of the Scientific Committee in early March, which will manage the project, we already had the next meetings of the five working groups, in which we were divided. Update of the patient care clinical guideline. stubborn with Covid; training program development; application development; Comprehensive covid rating scale; ic Regicovid-Ap register. In these meetings, we reminded you of our main goal, organized the goals of each line of work to mark the tasks, and forced you to accomplish them.
What is the main goal of the program defined during the meeting?
Raise knowledge about sustainable Covid to help help long-term patients improve their health and quality of life. The central face of the project is the patient, This is an innovative approach as we put the patient at the center of the project.
“It is clear that we already need to update the long-term clinical guideline.”
Will there be an update of the clinical guideline soon?
At the moment we have not set a date, but it is clear that we already need an update. Persistent Covid is an evolving disease և we do not know the evidence that will emerge. What we have done is how we are going to update, that is, we will change the structure or just include evidence. We have decided to divide ourselves as a group according to related professions. So everyone would review the part where they are more expert and the more general ones would do a general review. In addition, it should be noted that all companies will participate in this group.
What is it like to work with so much uncertainty?
The clinics do not know what is going on, ինձ this is news to me և for them. So far, the studies I have participated in are based on solid evidence. Everything is new here և you work as you go. The problem is that being such a new disease, sometimes there is no consensus or recognition, ան uncertainty arises, hindering scientific progress.
What are your goals in terms of training and implementation?
Here we had already done a little homework, we had already consulted with some companies to see what the training or application model might look like. Nothing has been decided at this moment. One of the most important things is to define the methodology of the work we are working on. Our idea is that this is a way to manage the clinical guideline in a practical, simple way. Use will be professional և will help health professionals make decisions.
During the course, quite interesting ideas arose, in addition to what we had from the coordination of specialist training programs. For example, using different measurements, training designed for professionals և the general public, or access to a university environment for student training.
What are they looking for in the rankings?
The problem with this disease is that patients are evaluated as if they have a set of symptoms, not a complete disease. The symptomatology is very diverse, each patient is different, there is no scale to help with the diagnosis. What we are going to do is set a scale that evaluates the patient as a whole, not the sum of his symptoms.
Will the Regicovid-AP register be a new impetus for trying to identify the clinical genetic factors associated with persistent covid?
We are now going to define more variables across all groups, as not all scientific societies have been before. We also want to recruit more patients because we are also going to conduct a parallel genetic study with a sample of the patients we recruit. The idea is to identify the clinical genetic factors that predispose to Covid. We have already defined how genetic factors can be detected, but doctors must return to the registry.
Did they get the support of the Charles III Institute?
We have chosen the national call called “strategic health action”. This is a very strong call, in which we have presented this whole joint project.
Do you feel underestimated by ordering another study by the Health Service to ignore yours?
This did not sit well with the SEMG ակում affected platform. During his tenure we offered to work with the ministry և we continue to work today. The door is always open, it will be open. They are also interested in cooperating with us, as 56 companies from different spheres are involved.
“The idea is to create an identity, and later to create a web page to release information that is open to the public.”
Will this stage of organization be delayed during the next month’s stage of development and implementation?
I understand that yes, but first you have to fill in the group definition. We need to formalize the status of the group in order to reach a regulatory framework that will allow us to work more safely as we prepare to share knowledge. The idea is to create an identity, then create a web page to share information that is open to the general public. They also have different dimensions for accessing training activities. Then, when all the meetings are held, all the minutes are collected, և we will formulate the group, we will start getting results.
What form can be given to the project?
We are looking for the best possible way. It would be ideal to form a scientific consortium, but for that there should be a call from the administration. We are waiting for it to come out, և if we can not do it right away, we will find another way. In my experience, such multidisciplinary research groups have come together to form an association, partnership agreement, or simply name a website. We will choose the best way to formalize it immediately.
Whether it may contain announcements, data or notes from healthcare providers or professionals, the information contained in the medical record is edited and prepared by journalists. We advise the reader to consult a healthcare professional with any health issues.