The Thalidomide Scientific-Technical Committee has reported this morning of the provisional results of the evaluation carried out among people with congenital anomalies supposedly due to this cause. This work has been carried out by the experts that make up the Committee who have had the collaboration of the technical unit of the Carlos III Health Institute, the diagnostic units of the autonomous communities and an advisory group of the World Health Organization ( WHO), composed of world leaders in this area.
The evaluation has been focused on the people affected, it has been carried out collaboratively and with the utmost rigor. The total number of applications received is 584, of which 511 have been evaluated so far. The procedure has not yet been completed because there are files not completed by the autonomous communities and others in which the information has been requested to be completed. In addition, some new registration can still be received. Of the evaluations carried out, those compatible with thalidomide embryopathy are 103.
The president of the Scientific-Technical Committee, Encarna Guillén Navarro, has indicated that a guarantee process has been followed so that sensitivity to specificity has predominated and therefore, cases that have raised reasonable doubts have been considered compatible. The human aspect has also been taken into account and empathy has been transmitted with all people with serious congenital problems.
In the coming weeks, the reports will be sent to the autonomous communities that will subsequently be transmitted to the patients, carrying out the accompaniment and advice to the clinicians who will be in charge of this task so that it is carried out in the most humanized way possible.
Within the evaluation process, a panel of genes has been designed and developed, specific and unique to the world, of 47 of them, linked to 55 different diseases, which may resemble the anomalies of thalidomide embryopathy.
It should be noted that this panel has been created by clinical geneticists of the National Health System without the participation of the pharmaceutical industry or private companies.
This work has an important impact for families since those people not compatible with thalidomide embryopathy in which during the evaluation process a genetic origin is identified for their congenital anomalies, genetic counseling will be provided to both those affected and their families with in order to prevent new cases in the offspring.
Regarding the draft Royal Decree that regulates the procedure for granting aid to affected persons, it has been indicated that its procedure, once the new Government is constituted, will follow the pending procedures as quickly as possible.