Centers, services and reference units of the SNS.

https://www.sanidad.gob.es/profesionales/CentrosDeReferencia/home.htm

The project for the designation of Centers, Services and Reference Units (CSUR) of the National Health System (SNS) aims to goals: 

  • Improve the equity in access to high-level specialized services for all citizens when they need it.
  • Concentrate high level of specialization experience guaranteeing quality, safe and efficient healthcare.
  • Improve the care of low prevalence pathologies and procedures.

In order to make effective the provisions of Law 16/2003, of May 28, on cohesion and quality of the National Health System, the Royal Decree 1302/2006,  of November 10, which establishes the bases of the procedure for the designation and accreditation of the reference centers, services and units of the National Health System.

Royal Decree 1302/2006 (English version) 

User referral procedure.

Request for Assistance to a CSUR:

The request will be directed only to a CSUR and not to several centers at the same time. In the case of
that due to duly justified exceptional circumstances the application was not admitted
by the requested center, it will communicate it to the community that refers the patient and it
will restart the application process to a second center.
The request for assistance through SIFCO will include completing the data
corresponding to:
Patient data:
 Patient identification and residence data.
Identification data of the requesting health center:
 Data from the Health Center.
 Data of the Service or Clinical Unit that requests assistance.
 Identification data of the doctor responsible for the patient's care.
All this, in order to facilitate direct communication between the doctors responsible for the
patient of the requesting center and the CSUR.
Data from the CSUR from which assistance is requested:
 Identification data of the CSUR. Assistance can only be requested from those centers, services or
units that have been designated as reference by the CISNS.
Clinical report of the patient that must include:
 Brief summary of the patient's medical history related to the reason for referral,
recording the clinical reason why the patient's referral is requested.
 Diagnostic and therapeutic procedures performed (ICD10ES) related to the reason for the
derivation.
 Other data that is considered appropriate to review.
Requested assistance:
 Pathology or procedure for which assistance is requested from the CSUR, which must be among the
agreed by the CISNS and included in Annex III of Royal Decree 1207/2006, of October 20,
which regulates the management of the Health Cohesion Fund.
 Main diagnosis (ICD10ES) for which the patient is referred.
 Indicate if the attention requested is a review.
 Indicate if the care requested corresponds to an outpatient procedure.

Acceptance of the application by the Autonomous Community/CSUR requested:

In order to minimize delays in patient care and guarantee the continuity of the
assistance, the CSUR must carry out the acceptance and appointment of the patient within the deadline
maximum of 15 days since you received the request for assistance.
To do this, the requested Center must complete the following through SIFCO
information:
Patient Citation:
Once the assistance proposal is received, the CSUR must accept it and issue a summons to the
patient. In the event that, for exceptional reasons, assistance is not accepted, reasons must be given.
expressly the reasons for the denial.
The summons will include the following information:
 Identification data of the health center.
 Service or clinical unit that will care for the patient.
 Place, date and time of the summons.
Patient preparation: It is very important that the conditions of how
The patient must be prepared (fasting, etc.), as well as the tests that must be indicated.
before going to the CSUR and other clinical documents that you must provide.

Assistance made:

The center that provides care must incorporate into SIFCO, when the patient is discharged, the
data relating to the assistance provided and specifically, it will be indicated:
Patient data:
 Patient identification and residence data.
Data from the CSUR where the patient has been treated:
 Health center.
 Service and clinical unit.
 Identification data of the physician responsible for care.
Type of assistance provided:
 The pathology treated or the procedure performed from among those listed in Annex III of the
Decree 1207/2006.
 The main diagnosis and secondary diagnoses (ICD10ES coded at the highest level of
disaggregation, indicating the corresponding marker POA1 or POA2).
 The primary and secondary diagnostic and therapeutic procedures (ICD10ES coded at the highest level of disaggregation) performed on the patient, indicating whether the procedure has been
carried out in the center or in another center.
Indicate whether the care provided corresponds to a review and in what terms they should be carried out.
 Indicate if the care provided corresponds to a outpatient procedure.
Clinical report upon discharge: It will include a brief summary of the care provided to the patient, the
results of the diagnostic and therapeutic tests performed and the treatment and the recommendations that you must follow in your Autonomous Community of origin.
Likewise, it will collect in the Patient Registry, the corresponding information that is included in
the criteria sheets approved by the CISNS for each of the pathologies or procedures.

Referral to ERN.

https://www.sanidad.gob.es/profesionales/CentrosDeReferencia/procedimientoERN.htm

On January 1, 2022, the Procedure for referring patients to a CSUR of the SNS for the presentation of their case in an ERN came into force, agreed by the Interterritorial Council of the SNS on July 30, 2021, with prior agreement from the Appointment Committee on December 16, 2020 and informed by the FCS Monitoring Commission on May 12, 2021. 

This procedure aims to improve the care and accessibility of patients with rare and complex diseases that require that their case be studied in an ERN.

This referral is made through the Information System of the Health Cohesion Fund (SIFCO) and It will not involve transfer of the patient; Only the documentation necessary for the assessment and study of the clinical case will be sent.. The derivation  of the clinical case must be made to one of the Units/CSUR participating in the corresponding ERN, which must be designated for the care of one of the pathologies included or similar to the area covered by said ERN and related to the main diagnosis that is the reason for the referral.

In the event that the Unit/CSUR, after assessing or reviewing the clinical case in coordination with the center of origin, concluded that the patient should be transferred to be treated in a Center or CSUR of the SNS, this referral will be made by the usual referral procedure of patients between Autonomous Communities through SIFCO, generating a new assistance order.

  • ERN of rare neurological diseases (ERN-RND): None in the CV.
  • ERN of rare neuromuscular diseases (ERN EURO-NMD): Hospital la Fe de Valencia.
  • ERN of rare congenital malformations and rare intellectual disabilities (ERN ITHACA): None in the CV.
  • Rare inherited metabolic disorders ERN (MetabERN): None in CV.

CSUR of the CV in the field of pediatric neurology.

  • Refractory epilepsy. U. Hospital and La Fe Polytechnic Valencian Community. 12-28-2010 Children and adults.
  • Surgery for movement disorders: Hospital U. y Politécnico La Fe C. Valenciana 05-29-2018 Children and adults.
  • Hereditary ataxias and paraplegia: U. Hospital and La Fe Polytechnic Valencian Community 12-28-2010 Children and adults.
  • Multiple sclerosis: U. Hospital and La Fe Polytechnic Valencian Community 12-21-2012 Children and adults.
  • Complex pediatric neurosurgery: Hospital U. y Politécnico La Fe Comunidad Valenciana 03-04-2013 Children
  • Congenital metabolic diseases: Hospital U. y Politécnico La Fe C. Valenciana 01-09-2015 Children and adults.
  • Rare neuromuscular diseases: Hospital U. y Politécnico La Fe C. Valenciana 04-30-2016 Children and adults.

CSUR in the field of pediatric neurology not available in the CV.

Genetic neurocutaneous syndromes (phacomatosis):

  • Sant Joan de Déu Hospital Catalonia 01-09-2015 Children.

Rare diseases presenting with movement disorders.

  • Hospital Clínic of Barcelona and Hospital of Sant Joan de Déu Catalonia 01-23-2015 Children and adults
  • General Hospital U. Gregorio Marañón Madrid 01-23-2015 Children and adults

Complex disorders of the autonomic nervous system.

  • Hospital U. La Paz Madrid 01-23-2015 Children and adults.

Prevalence of referrals to SIFCO.

To conduct a review of referrals from the last year.

Referral criteria to CSUR through SIFCO.

The objectives of the system, as set out in current legislation, are the improvement of equity, the concentration of highly specialized experience guaranteeing quality, safe and efficient healthcare, and the improvement of care for low-prevalence pathologies and procedures.

This is why selection criteria for referral must be implemented that guarantee adequate efficiency, so as to avoid unnecessary referrals of those pathologies that can be adequately treated nearby, avoiding added costs for families and patient roaming.

The main population group that may raise doubts about referral is the population that presents pathologies that, despite being of low prevalence, are not going to benefit from equity (access to diagnostic techniques or therapies not available in their geographical area) or the concentration of highly specialized experience (due to lack of specialized medical treatments) or the improvement of care for said pathologies or procedures (access to clinical trials and research).

Criteria:

  • Availability of diagnostic techniques not achievable by sending samples. Functional tests that require clinical experience for interpretation, or cutting-edge technology.
    • Clinical diagnosis: Dysmorphology and syndromic neurological diagnosis.
    • Neurophysiology: Prolonged VideoEEG. Pediatric EMG-ENG. Repetitive stimulation.
    • Neuroimaging, when it is necessary to use machinery not available in your geographical area.
    • Diagnostic therapeutic tests that require clinical experience: for example apomorphine or levodopa.
  • Availability of treatments infrequent use in which the clinical experience can be of significant benefit to the patient:
    • Dravet disease: Fenfluramine and Stiripentol.
    • Lennox syndrome: Fenfluramine, felbamate and rufinamide.
    • Channelopathies and other myotonias: Mexiletine.
    • Paroxysmal movement disorders: Acetazolamide.
    • Disorders of neurotransmitter metabolism. MAOI. Levodopa. Carbidopa. 5-HT.
    • Genetic diseases of the NMDA receptor. Memantine.
    • Glut-1: Triheptanoin.
    • VMAT deficiency: Pramipexole.
    • Catastrophic neuroinflammatory diseases with failure of IVIG and Plasmapheresis. BMT, CAR-T, other immunoregulatory therapies.
  • Participation in therapeutic clinical trials advertised internationally (ClinicalTrials) or nationally (REEC). https://reec.aemps.es/reec/public/web.html

Link query.

It is necessary to articulate a liaison consultation in which the indications issued by the reference centers are implemented and it is guaranteed that they are adequately fulfilled, also providing the possibility of coordinating the necessary diagnostic tests that could be carried out within their geographical scope to avoid unnecessary travel.

Said liaison consultation can also provide the possibility of disseminating specific knowledge and improving care for low prevalence diseases, in accordance with the founding objectives of the CSUR system.

Quality control and annual audit.

Requests for attention will be reviewed based on:

  • Referral criteria. See above.
  • Patient preparation.
    • Conditions of how the patient should be prepared (fasting, etc.).
    • Tests that must be carried out before going to the CSUR.
    • What other clinical documents you must provide.

The care already provided will be reviewed, through the mandatory clinical reports of the care provided to verify that they meet the requirements present in the legislation:

Type of assistance provided:

 The pathology treated or the procedure performed from among those listed in Annex III of the
Decree 1207/2006.
 The main diagnosis and secondary diagnoses (ICD10ES coded at the highest level of
disaggregation, indicating the corresponding marker POA1 or POA2).
 The primary and secondary diagnostic and therapeutic procedures (ICD10ES coded at the highest level of disaggregation) performed on the patient, indicating whether the procedure has been
carried out in the center or in another center.
Indicate whether the care provided corresponds to a review and in what terms they should be carried out.
 Indicate if the care provided corresponds to a outpatient procedure.

Clinical report with care plan (treatment goals, discharge plan, treatment and recommendations).

It will include a brief summary of the care provided to the patient, the
results of the diagnostic and therapeutic tests performed and the treatment and the recommendations that you must follow in your Autonomous Community of origin.