Scientific Board Gathered for Children with SMA

Scientific Committee convened for children with SMA
Scientific Committee convened for children with SMA

Health Minister Fahrettin Koca, Our SMA Scientific Committee convened to evaluate the latest developments in gene therapy.

Minister Koca used the following statements; “I want you to know that we take every precaution regarding the treatment of our children with SMA. We follow all current developments to do the best for them. Our SMA Scientific Committee decides which treatment is suitable for which patient. We ensure that this treatment is applied when it can be scientifically evaluated.

Our SMA Scientific Board gathered online and discussed the issues on the agenda. Our Scientific Committee consists of our most experienced scientists in the treatment of SMA disease.

In their evaluation;

1. Recent developments in gene therapy have been examined; After the 25/11/2020 workshop, there was no additional evidence in the scientific publication regarding the effectiveness and reliability of the treatment,

2. It is necessary to increase the accessibility of correct information in both written and visual media by sharing the developments about SMA and the decisions of scientific advisory board meetings with the press,

3. It is not appropriate to organize campaigns in our country for the application of gene therapy, where there is not enough evidence in terms of efficacy and reliability,

4. There is information that our citizens who have received Zolgensma treatment abroad are trying to continue their Nusinersen treatment after their return to our country, there is no safety information about the use of both drugs in the scientific literature, therefore serious side effects may occur, and necessary measures should be taken in this regard,

5. The need for studies to determine the objective contribution of SMA children to social life by following their post-treatment cognitive and physical development,

6. At the meeting, medical genetic experts who are consulting the Ministry of Health on SMA screening studies were hosted to inform the board, and the Scientific Committee was informed about the latest status of the current studies and their opinions were taken. It was emphasized that especially with the COVID period, the PCR device infrastructure was developed in our country, and in this context, it was stated that the studies for the development of both pre-marital carrier screening and newborn screening kits were organized by TUSEB. As soon as possible, it is vital to implement screening processes, especially pilot applications, throughout the society,

7. The necessity of increasing the number of Nusinersen treatment centers; In order to standardize the treatment, it was stated that besides determining the criteria for the centers that will apply, training should be organized for PCR, child / adult neurology specialists and related branches for assessment and standardization of practice.

Dear Citizens,

I want you to know that we take all kinds of precautions regarding the treatment of our children with SMA. We follow all current developments to do the best for them. Our SMA Scientific Committee decides which treatment is suitable for which patient. We ensure that this treatment is applied when it can be scientifically evaluated. From now on, be sure that whatever treatment is going to improve the life of our child, we will also apply that treatment.

We only aim is to work for all members of a healthier Turkey.

Armin

sohbet

Be the first to comment

Comments