Home > Add Cleft Centre, Hospitals or Research Centres

*I consent to the details I am providing in this form being uploaded onto the European Cleft Gateway, a directory of resources supporting care, treatment and collaboration in areas of common clinical and scientific interest in the field of cleft lip and palate. I understand the details will be publicly accessible on the Gateway website www.gateway.europeancleft.org . The Gateway is administered by the European Cleft Organisation, a registered charity in the Netherlands www.europeancleft.org
I attest that the details I am providing are true, accurate and current.

*I understand I can remove consent at any time and ask for my details to be modified or removed by contacting the European Cleft Organisation.

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*If I am adding details of persons other than myself in my hospital/cleft centre/research unit, I acknowledge that I am authorised to do so:

Yes

* All fileds marked in blue are mandatory in order for your information to be registred in the gateway.

(All fields marked in a * will form part of the search fields on the Gateway and if they are not filled in your organisation will not show up in the corresponding search areas.)


Team Members / Researchers and Contact Details*


Number of new referrals to your centre annually*

Number by cleft type annually*

Record collection protocol*

YesNo

YesNo

If not this does not conform to WHO recommendations what record taking protocol do you have?

Cleft support groups, parent groups, NGO’s known to the team:

EU Biobank

We already have CLP trio (child, mother, father) DNA samples from EUROCRAN and would like to build on this resource for future studies. Are you aware of stored CLP DNA samples from previous studies that it may be possible to use for future studies?

Primary surgical protocol


BILATERAL CLEFT LIP REPAIR


PRESURGICAL ORTHODONTICS USED?


No

NASAL ALVEOLAR MOULDING (NAM) USED?


No

CLEFT PALATE REPAIR


Any comment on service provision?

How do you ensure continued patient follow up throughout the treatment pathway? E.g patient database

How do you maintain your patient records? E.g manual or electronic

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

Surgery: AllPartNoneDon't know

Orthodontics: AllPartNoneDon't know

Speech & language therapy: AllPartNoneDon't know

Clinical Research

Please list any additional team members and affiliated RESEARCHERS who are or would like to be involved in clinical research e.g. inter-centre comparisons, cohort studies, clinical trials

YesNo

Current and Previous Research Activity

YesNo

YesNo

YesNo

YesNo

If YES please enter funding body if happy to share them (optional)

CLINICAL Research activities you would be happy to become involved in*

YesNo

YesNo

YesNo

YesNo

LABORATORY based research you would be happy to be involved in*Required

YesNo

YesNo

Is there a cleft lip and palate/craniofacial scientific organisation in your country? please give details (Principle contact, address, email, phone, web etc)

Useful websites or links you could recommend (e.g other cleft organisations)