*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 consent:---NOYES *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. *ECO is actively engaged in complying with all the new regulatory requirements of the General Data Protection Regulations. *I would like to receive newsletters and other mailings from the European Cleft Organisation I consent:---NOYES *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. Country * Name of cleft centre * Principle contact * Address * City * Zip Code * Telephone * Email * Website (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.) Description of your organisation Team Members / Researchers and Contact Details* Surgeon(s) & their speciality* add Speech and language therapist(s)* add Orthodontist(s) * add Specialist nurse(s) * add Psychologist(s) * add Clinical Geneticist(s) * add Otolaryngologist(s) (ENT) * add Audiologist(s) * add Paediatric Dentist(s) * add Restorative Dentist(s) * add Dental Technician(s) * add Researcher(s) * Add Other* add Number of new referrals to your centre annually* TOTAL * Number by cleft type annually* UNILATERAL CLEFT LIP & PALATE (UCLP) * Number per year BILATERAL CLEFT LIP & PALATE (BCLP) * Number per year UNILATERAL CLEFT LIP ONLY (UCL) * Number per year BILATERAL CLEFT LIP ONLY (BCL) * Number per year CLEFT PALATE ONLY (CP) * Number per year PIERRE ROBIN SEQUENCE CASES * Number per year NUMBER OF CASES WITH ADDITONAL ANOMALIES * Number per year Record collection protocol* Are records routinely collected at specific ages? YesNo Does this conform to WHO recommendations for different cleft types? 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: Name of the organization: Principle contact: Address: Phone: E-mail: Website: 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? Number(s) for CP Number(s) for CLP Other CFAPlease specify Primary surgical protocol UNILATERAL CLEFT LIP REPAIR Add BILATERAL CLEFT LIP REPAIR One Stage Two Stage PRESURGICAL ORTHODONTICS USED? Yes No NASAL ALVEOLAR MOULDING (NAM) USED? Yes No CLEFT PALATE REPAIR One Stage Two Stage 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 add Is your centre happy to be involved in research? YesNo Current and Previous Research Activity Participation in intercenter studies (past or current)* YesNo Add Participation in other research collaborations / projects (past or current) YesNo Add PUBLISHED RESEARCH PAPERS* YesNo Add RESEARCH GRANT FUNDING RECEIVED YesNo If YES please enter funding body if happy to share them (optional) CLINICAL Research activities you would be happy to become involved in* Randomised clinical trials? YesNo Inter-centre comparison of outcome? YesNo Prospective cohort studies? YesNo DNA collection? YesNo LABORATORY based research you would be happy to be involved in*Required Laboratory genetics/genomics research YesNo Animal models research 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) Add
