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Request the collaboration of 300 volunteers to have a follow sampling allows to know if they are carriers of the neurodegenerative disorder "Celia encephalopathy" (14/12/2015)

Totana City Council and the Association of Relatives and Affected Lipodystrophy (AELIP) request selfless and voluntary cooperation of citizens to sample that allows to know if they are carriers of the neurodegenerative disorder "encephalopathy Celia" with a high rate of prevalence in this municipality.

To do this, Totana Town Council will submit a thousand letters to residents, natives of Totana, older than 49 years, so that people who wish to participate and the study realizarles 300 people.

So, if enough people required for sampling can not submit, we must refer more to complete the study samples.

Today, 5,851 people live in Totana with this age;

so in the event that sufficient for sampling people submit not necessary, will have to send more for 300 volunteers needed for scientific study.

In 2013, it was described in six children in the Region of Murcia a new genetic disease, "Celia encephalopathy."

Furthermore, the fact that most carriers of the mutation responsible for the disease are natives of Totana is given.

This is a severe neurodegenerative disease that follows a pattern of autosomal recessive inheritance, ie, that parents can transmit the disease but do not suffer.

The University of Santiago de Compostela, in collaboration with the AELIP and the Hospital Virgen de la Arrixaca association is conducting a study, led by Professor David Araújo-Vilar, which aims to determine the prevalence (frequency) of the actual carriers mutation in Totana.

This, in addition to the scientific interest is irrelevant since it will advise potential asymptomatic carriers of the potential risk of having offspring with the disease.

Therefore, the City Council and AELIP are going to get in touch by letter with neighbors of Totana, who meet the requirements described above, to see if they are interested in this study, which involves analyzing the DNA obtained from a small blood sample to determine whether or not you carry this mutation.

The risks of this procedure are minimal (derivatives venipuncture);

and blood samples, along with the updated (refer to annex) and personal data (name, address and telephone number) will be sent by post to the University of Santiago de Compostela consent for further processing.

All information will be treated in strict confidentiality;

and in case anyone was bearer of that mutation, it would be informed in writing and by telephone and invite you, if you wish, your family could be analyzed as well.

The study analyzed 300 volunteers who express their desire to participate and present the documents listed in the letter (data sheet and consent form to participate in a research study).

Those interested in participating in this study should go to AELIP offices, located in the Multidisciplinary Center for Integral Attention to individuals and families with rare diseases "Celia Carrion Perez de Tudela" located on San Cristobal number 7 and submit documents Annex 1 and Annex 2, completed on 9, 11, 14 and December 15 from 10am to 14 and from 17 to 20 hours (in this first).

Once provided the documents is assigned a day and time to proceed with the extraction of the blood sample is not necessary to go fasting.

Totana City Council wishes to acknowledge the cooperation and sensitivity of the people involved in this initiative to contribute to the scientific study.

Source: Ayuntamiento de Totana

Notice
UNE-EN ISO 9001:2000 - ER-0131/2006 Región de Murcia
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