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Center of Excellence AATD

Andalusian Center Alpha 1

We join efforts to achieve better results

The need to have unified criteria at the national level for the diagnosis, follow-up and treatment of patients with alpha-1 antitrypsin deficiency (AATD)

In addition, it promoted the creation in 1993 of the Spanish Registry of Patients with AATD (REDAAT), currently the Spanish Network of AATD, as in other European countries, as well as in the United States.

Objetives

Iis initial objectives were:

  • Know the characteristics and frequency of the AATD in Spain.
  • Establish regulations adapted to our country on the treatment and follow-up of patients with the deficit.
  • Offer information to doctors who treat these patients throughout Spain.
  • Increase knowledge and interest in this disease and try to reduce underdiagnosis or delay in knowledge of the deficit.
  • Offer technical support for the determination of the Pi phenotype and, if necessary, the genotype in individuals with suspected AATD.

Challenges

The idea of establishing a network of centers of reference or excellence in AATD in Spain arose at one of the REDAAT committee meetings in 2006.

During 2007, a preliminary internal document was prepared on the characteristics that centers should have and accreditation conditions.

Basis for transformation

The model of the network of reference centers in Germany was taken as the basis of transformation for its elaboration, with the following documents as reference:

  1. Rare diseases task force recommendations
  2. Spanish workshop rare diseases
  3. RD 1302/2006 of November 10 on Reference Centers
  4. European Workshop on centers of expertise and reference network for rare diseases.

Aims

  • Create a network of reference centers that meet quality and excellence criteria for their experience in the diagnosis and follow-up of patients with AATD, endorsed by the Spanish Society of Pneumology and Thoracic Surgery (SEPAR) through accreditation.
  • Invigorate REDAAT activities and bring them closer to professionals and patients.

Functions of an Alpha-1 Center of Excellence

The functions of an Alpha-1 Center of Excellence are the following:

CARE ACTIVITY

Our essential objective is to provide personalized and quality health care aimed at patients with AATD and their families.

Our consultation covers the Sanitary Area of the HU Clínico San Cecilio and maintains a relationship with pulmonology professionals from hospitals in Granada and its province, to answer questions about patient care and treatment.

The updating of knowledge and the permanent development of skills and attitudes aimed at meeting the needs of patients is a very important challenge for the professionals of the Pulmonology Management Unit of the San Cecilio HU and the Alfa-1 Center of Excellence in Granada.

Who are we?

We are a team of pulmonologists specialized in COPD, with experience in AATD.

We have a multidisciplinary team made up of pulmonology, digestive (hepatology unit), pneumopediatrics, rehabilitation, day hospital nursing, and hospital pharmacy.

RESEARCH ACTIVITY

One of the strategic objectives of the Alfa-1 Center in Granada is the creation of research lines

The main objective is to improve knowledge about the disease among healthcare professionals and the community of Alpha patients, which can be applied in routine clinical practice.

This page contains the projects developed or under development, as well as related publications and articles.

The main objective is to expand knowledge of it, and for this, an international database (EARCO) has been created, which includes clinical information on patients.

In addition, we participate in scientific conferences or congresses where the results of the research or clinical studies in which we participate are presented.

TEACHING ACTIVITY AND SCIENTIFIC DISSEMINATION

We give clinical sessions, presentations or conferences in different hospitals, universities and congresses, in order to publicize the importance of diagnosing this rare disease.

On the other hand, we organize activities and workshops with patients, patient associations and family members.

COLLABORATIONS WITH OTHER INSTITUTIONS AND ENTITIES

Communication, cooperation and collaboration with the different entities help us to improve health care, as well as to advance more quickly and efficiently.

The main collaborators are:

  1. Asociación Alfa1 de España: Patient organization created to defend the interests of people affected by Alpha-1 Antitrypsin Deficiency and their families and caregivers.
  2. REDAAT: is an AATD research network of expert professionals in this disease.
  3. EARCO: stands for European Alpha-1 Research Collaboration, it is a pan-European network committed to promoting clinical research and education in AATD. In addition, it encourages a collaboration open to all researchers around the world who care for patients with AATD.
  4. FEDER: federation of rare diseases, which promotes the rights of those who live with a rare disease and in search of a diagnosis, generating strategies that contribute to improving their quality of life.
  5. Orphanet: portal that gathers and improves knowledge on rare diseases to improve the diagnosis, care and treatment of patients with rare diseases.
  6. Grifols: leading global company in the health sector that develops medicines derived from plasma, so necessary for the treatment of AATD.
  7. Centros de excelencia: Centre Alfa, de Barcelona, Centro Galego Alfa 1, Centro Alfa 1 de Sevilla y Centro Andaluz Alfa We offer DAAT clinical advice to the Alfa 1 Spain Center.

Together, we exchange knowledge, we collaborate to improve aspects as important as the diagnosis of AATD, care for Alpha patients and their treatment with the aim of improving their quality of life.

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Centro Andaluz Alfa-1