How will long covid define the collaborative group?

Paula Sánchez Diz, coordinator of the medical group that studies persistent covid.

The Spanish scientific societies want acquire more scientific knowledge about the cpersistent ovid to be able to provide better health care to a pathology that is already a reality. For this, until 56 medical entities with a multitude of specialties have come together to address the identification of genetic and biological symptoms, define care protocols and design specific training.

A work surrounded by uncertainty and that is being coordinated by the biologist and researcher specializing in population genetics and forensics Paula Sanchez Diz, who in an interview with Medical Writing reveals the status of this still unnamed project that seeks to be formalized immediately to start generating knowledge once the definition phase of its structure has been completed.

What phase is the project in?

We have had the meeting of the scientific committee, which is going to govern the project, at the beginning of March and we have already had the subsequent meetings of the five working groups in which we have divided: update of the clinical guide for patient care with persistent covid; development of the training program; application development; persistent covid comprehensive assessment scale; and Regicovid-Ap registry. In these meetings we have reminded you of our main objective and we have organized the objectives of each line of work to mark the tasks and get you to carry them out.

What is the main objective of the project defined in said meeting?

Increase knowledge on persistent covid to improve assistance to longcovid patients to improve their health and quality of life. The central figure of the project is the patient and this is an innovative point of view because we put the patient at the center of the project.

“It is clear that we already need an update of the long covid clinical guide”

Is there going to be a clinical guideline update soon?

At the moment we have not set a date, but it is clear that we already need an update. Persistent covid is an emerging disease and we do not know the evidence that will emerge. What we have done is devise how we are going to update, that is, if we are going to change the structure or just incorporate evidence. We have decided to divide ourselves as a group by related specialties. Thus, each one will review the part in which they are more expert and the more generalists will 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?

It is an emerging disease and there is still a lot of lack of evidence. The problem is that when the disease is not recognized or there is no consensus, scientific progress is hindered.

In terms of training and implementation, what goals have you set?

Here we had already done a bit of homework, we had already consulted with some companies to see what the training or the app model could be like. At the moment, nothing is decided. One of the most important things is to define the work methodology and we are working on it. Our idea is that it be a way to manage the clinical guide in a practical and simple way. The use will be professional and will help health professionals in making decisions.

In the training, quite a few interesting ideas have arisen, in addition to the one we had from coordination of training programs for professionals. For example, using different formats, training designed for professionals and for the general public or accessing the university environment to also train students.

What do they look for with the rating scale?

The problem with this disease is that patients are being evaluated as if they had a sum of symptoms and not a complete disease. The symptomatology is very varied and each patient is different and there is no scale that helps the diagnosis. What we intend is to define a scale to assess the patient in an integral way and not by the sum of its symptoms.

Will there be a new boost to the Regicovid-AP registry, with which they seek to identify clinical and genetic factors associated with persistent covid?

Now we are going to define more variables between all the groups because before there were not all the scientific societies. We also want to recruit more patients because we are also going to do a parallel genetic study with a subsample of the patients we recruit. The idea is to identify clinical and genetic factors of susceptibility to suffering from persistent covid. We have already defined how to detect genetic factors, but clinicians must return to the registry.

Have they obtained the support of the Carlos III Institute?

We have opted for the national call called “strategic health action”. It is a very important call and in it we have presented this entire collaborative project.

Do you feel undervalued by Health for having commissioned another study and not taking yours into account?

In its day we offered to work with the Ministry and we continue to do so today. The door is and will always be open. They are also interested in collaborating with us, since 56 companies from very different fields are involved.

“The idea is to create an identity and, later, set up a web page to dump information and that is open to the general public”

In the next month, will this phase of organization be left behind and a phase of development and implementation will be passed?

I understand that yes, but first we must complete the definition of the group. We have to formalize the status of the group to achieve a regulatory framework that allows us to work more safely, since we are going to share knowledge. The idea is to create an identity and, subsequently, set up a web page to dump information and that is open to the general public. Also have different formats to access training activities. Then, once all the meetings have been held, all the minutes have been collected and we have formalized the group, we will begin to obtain results.

What form can be given to the project?

We are looking for the best possible way. The ideal would be to make a scientific consortium, but for this a call from the Administration has to come out. We are waiting for it to come out and if we cannot do it immediately we will find another way. Based on my experience, other similar multidisciplinary research groups have been consolidated by making an association, a collaboration agreement or simply putting a name and making a web page. We will choose the best option to formalize it immediately.

Although it may contain statements, data or notes from health institutions or professionals, the information contained in Medical Writing is edited and prepared by journalists. We recommend the reader that any questions related to health be consulted with a health professional.

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