Servico de Cirugia Infantil Hospital Universitario de Cruces Osakidetza – Servicio Vasco de Salud

Principle contact details

Contact name:CARMEN PRADO
Address:SERVICIO DE CIRUGÍA INFANTIL
HOSPITAL UNIVERSITARIO DE CRUCES
PLAZA DE CRUCES SN
48390 BARAKALDO, BIZKAIA, SPAIN
Country:Spain
Telephone:946006342
Email:pradomc@gmail.com

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Other team members

Surgeon:NAGORE SOLAETXE, ESTÍBALIZ SOLÓRZANO.
Speech therapist:NIEVES PÉREZ
Orthodontist:RAÚL DÍEZ, RAÚL DÍEZ Jr.
Clinical geneticist:BLANCA GENER
Otolaryngologist:JUÁN MIRÓ, CARMEN FERNÁNDEZ, JOSE ANTONIO MUNICIO
Specialist nurse:ROMÁN DE CELIS
Psychologist:CRISTINA INIESTA
Other:JOAN BRUNSÓ (MAXILLOFACIAL SURGEON)
Patient follow up:CARMEN PRADO

Support group

Support group address:ASPANIF

JUNKAL ALMAJANO
Telephone: 696 34 99 75 E-mail: aspanif@gmail.com
Website: blog.aspanif.org

Annual case load

Cleft palate:17
Pierre Robin:4
Cleft lip (CL) Unilateral (UCL):10
Bilateral (BCL):3
Number of syndromic cases:Pierre Robin Syndrome, Velocardiofacial Syndrome (VCFS), Fetal Alcohol Syndrome (FAS), Stickler Syndrome, Opitz Syndrome, Treacher Collins Syndrome, Van der Woude Syndrome.

Primary surgical protocol

Timing of first repair and type of operation.

Complete UCLP:Lip Surgery (4 months), Palate surgery: -Wide: Velum (6 months) + Hard (12 months). ………………-Narrow: Complete Closure (6 months).
Complete BCLP:Presurgical Orthopedics, Lip Surgery One Stage (6 months) Palate surgery: -Wide- Velum (9 months) + Hard (12 months). ……………… -Narrow- Complete Closure (9 months).
Isolated CP:Palate surgery: -Wide- Velum (6 months) + Hard (12 months). ……………… -Narrow- Complete Closure (6 months).

Record collection protocol

Are records routinely collected at specific ages?Yes
Does this conform to WHO timing recommendations
(birth, 5, 10, 15 and 20 years)?
Yes

State coverage of costs

Are the costs of the following treatments covered by the state (free to the patient)?

Surgery costs:All
Orthodontic costs:Part
Speech and language therapy costs:Part

Clinical research

Clinical team members who are or would like to be involved in clinical research:

Member details:CARMEN PRADO - SURGERY -

NAGORE SOLAETXE - SURGERY -

ESTÍBALIZ SOLORZANO - SURGERY -

Current research activity and data collection

Type(s) of software used:Word, Excel
Published research papers:Yes
Details of publications:Guía de fisuras labiopalatinas. Una patología crónica.
Willing to share Powerpoint presentations:Yes

EU Biobank

Stored CLP DNA samples available for use in future studies:

Number for CP:100
Number for CLP:80

Potential clinical research activities

Clinical research activities interested in being involved in:

Randomised clinical trials:Yes
Inter-centre comparison of outcome:Yes
Prospective study:Yes
DNA collection:Yes

Potential laboratory based research activities

Laboratory based research activities interested in being involved in:

Laboratory genetics/genomics research:Yes
Animal models research:Yes

National cleft lip and palate / craniofacial scientific organisation

Organisation details:SOCIEDAD ESPAÑOLA DE FISURAS FACIALES (SOCEFF)
Spanish Society of Facial Cleft
ALEJANDRO RIVERA
soceff@soceff.org
www.soceff.org

Useful websites or links

Useful websites or links:www.soceff.org
blog.aspanif.org