Leeuwarden/Friesland
Principle contact details
| Contact name: | Dr K. Heijdenrijk |
| Address: | Dept. of Plastic and reconstructive surgery Henri Dunantweg 2 8934AD Leeuwarden The Netherlands |
| Country: | Netherlands |
| Telephone: | +31(o)582866141 |
| Email: | schisis@ZNB.nl |
| Web address: | Visit website |
Other team members
| Surgeon: | CM Mouës MD PhD, plastic surgeon. D van Dam MD, plasticsurgeon |
| Speech therapist: | JM Dijkstra Putkamer; J Krooshof |
| Orthodontist: | BD van der Meulen |
| Clinical geneticist: | H Veenstra -Knol |
| Otolaryngologist: | N. Reuchlin, MD |
| Psychologist: | H. van 't Hoff, orthopedagoge; N Stellema, MMW |
| Other: | K. Heijdenrijk, MD PhD, Maxillofacial surgeonR. Hovens, MD, special dentistA. Kamps, MD PhD, pediatricRJ Sol, AudiologyK.Koster, med fotogr. |
| Patient follow up: | Schisis Team Friesland |
Support group
| Support group address: | BOSK Laposa |
Annual case load
| Cleft palate: | 5 in 2012 |
| Pierre Robin: | 6 |
| Cleft lip (CL) Unilateral (UCL): | 12 |
| Bilateral (BCL): | 10 |
| Number of syndromic cases: | +- 14 Goldenhar VCF Apert Di George |
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 |
| What record taking protocol is used: | registration is conform the Dutch registrysystem |
State coverage of costs
Are the costs of the following treatments covered by the state (free to the patient)?
| Surgery costs: | All |
| Orthodontic costs: | All |
| Speech and language therapy costs: | All |
Current research activity and data collection
| Type(s) of software used: | word, acces |
| Participation in inter-centre studies: | Yes |
| Details of studies: | rotterdamgroningen use of Foliaticaccid NijmegenFriesland outcomstudies |
| Published research papers: | Yes |
| Details of publications: | Facial reconstruction on the abnormal skull model of a living patient. KGH van der Wal, RAH Neave, JJ van der Biezen and B van der Kuijl. Cleft Palate Craniof J 2001; 38: 317-322. Does the interaction between maternal folate intake and the methylenetetrahydrofolate reductase polymorphisms affect cleft with or without cleft palate risk. Rooij van IALM, Vermeij-Keers C, Kluijtmans LAJ, Ocke MC, Zielhuis GA, Goorhuis-Brouwer SM, Biezen vanderJJ, Kuipers-Jagtman AM, Steegres Theunissen RPM. Am J of Epidermiology 2003;157:583-591 ICBD Award: Top of the week paper on birth defects etc The use of buccal fatpads in palatal reconstruction. Yu Lan khouw, KGH van der Wal and JJ van der Biezen J Oral Maxfacialsurg 2004; 62: 749-51. Inferior-based pharyngeal flap for correction of stress velopharygeal incompetence in musicians: case reports and revieuw of the literature. Visser A, van der Biezen JJ. J of Plastic, Reconstructive and Aesthetic Surgery (2012), 65, 960-962. doi:10.1016j.bjps.2011.11.49 |
EU Biobank
Stored CLP DNA samples available for use in future studies:
| Number for CP: | ? |
| Number for CLP: | ? |
| Other CFA: | ? |
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 |
Potential laboratory based research activities
Laboratory based research activities interested in being involved in:
| Laboratory genetics/genomics research: | Yes |
National cleft lip and palate / craniofacial scientific organisation
| Organisation details: | NVSCA |
Total number of cases per annum
| Total cases per annum: | 30-40 |