No. of Cases Seen in a Year
- Total Referrals: 14
- Unilateral cleft lip and palate: 4
- Bilateral cleft lip and palate: 1
- Cleft palate only: 6
- With anomalies present: 14
Treatment Funded by State for National Residents
- Surgery costs: All
- Speech and Language Therapy costs: All
- Orthodontic costs: All
Comment on the service provision:
orthodontics and speech and langue is covered by insurance up to 19 years
Primary surgical protocol
Cleft Lip Repair:
- Timing: 4-6 months
Bilateral Cleft Lip Repair:
- Timing: 4-6 months
Cleft Palate Repair:
- Timing: 12 - 18 months
Record collection protocol
Are records routinely collected at specific ages? Yes
Does this conform to WHO recommendations for different cleft types? Yes
Intercentre Collaboration Interested
Research
Want to particpate in research? yes
Participation in inter-centre studies?
Current Research
Type(s) of software used: | all possible |
Published research papers: | Yes |
Details of publications: | Variation in FGF1, FOXE1, and TIMP2 genes is associated with nonsyndromic cleft lip with or without cleft palate. Nikopensius T, Kempa I, Ambrozaitytė L, Jagomägi T, Saag M, Matulevičienė A, Utkus A, Krjutškov K, Tammekivi V, Piekuse L, Akota I, Barkane B, Krumina A, Klovins J, Lace B, Kučinskas V, Metspalu A. Birth Defects Res A Clin Mol Teratol. 2011 Apr;91(4):218-25.Genetic variants in COL2A1, COL11A2, and IRF6 contribute risk to nonsyndromic cleft palate. Nikopensius T, Jagomägi T, Krjutskov K, Tammekivi V, Saag M, Prane I, Piekuse L, Akota I, Barkane B, Krumina A, Ambrozaityte L, Matuleviciene A, Kucinskiene ZA, Lace B, Kucinskas V, Metspalu A. Birth Defects Res A Clin Mol Teratol. 2010 Sep;88(9):748-56.Susceptibility locus for non-syndromic cleft lip with or without cleft palate on chromosome 10q25 confers risk in Estonian patients. Nikopensius T, Birnbaum S, Ludwig KU, Jagomägi T, Saag M, Herms S, Knapp M, Hoffmann P, Nöthen MM, Metspalu A, Mangold E. Eur J Oral Sci. 2010 Jun;118(3):317-9.MTHFR and MSX1 contribute to the risk of nonsyndromic cleft lip/palate. Jagomägi T, Nikopensius T, Krjutskov K, Tammekivi V, Viltrop T, Saag M, Metspalu A. Eur J Oral Sci. 2010 Jun;118(3):213-20.Epidemiologic factors causing cleft lip and palate and their regularities of occurrence in Estonia. Jagomagi T, Soots M, Saag M. Stomatologija. 2010;12(4):105-8.Replication of novel susceptibility locus for nonsyndromic cleft lip with or without cleft palate on chromosome 8q24 in Estonian and Lithuanian patients.Nikopensius T, Ambrozaityte L, Ludwig KU, Birnbaum S, Jagomägi T, Saag M, Matuleviciene A, Linkeviciene L, Herms S, Knapp M, Hoffmann P, Nöthen MM, Kucinskas V, Metspalu A, Mangold E. Am J Med Genet A. 2009 Nov;149A(11):2551-3. |
Research grant funding received: | Yes |
Details of funding: | ETF grant (ended 2011) Estonian Research Council http:www.etag.ee (new applications available) We will apply for speech project. |
Willing to share Powerpoint presentations: | Yes |
Clinical research activities interested in being involved in:
Randomised clinical trials: | Yes |
Inter-centre comparison of outcome: | Yes |
Prospective study: | Yes |
DNA collection: | Yes |
Clinical research
Clinical team members who are or would like to be involved in clinical research:
Member details: Triin Jagomägi orthodontist, team leader DDS, MSc, MOrth RCEd, PhD, University of Tartu
Heleia Nestal Zibo, oral surgeon, Ph.D student, North Estonia Medical center, Tallinn
Marianne Soots, oral surgeon, Tartu University
We have research activity in speech evaluation (Triin Jagomägi)
Non-clinical and laboratory research
Non-clinical and laboratory team members who are or would like to be involved in clinical research:
Member details: Estonian Genome Center, University of Tartu
http:www.geenivaramu.eeen
http:genomics.ebc.ee
Prof. Andres Metspalu- andres@ebc.ee
Tiit Nikopensius MSc, Ph.D- tiitn@ebc.ee
EU Biobank
Stored CLP DNA samples available for use in future studies:
Number for CP: we do need negotiate about that, we can start collecting trios, we do have few, we do have dna samples from cleft children. But we have special rules for that and we do need acceptance from Research Ethics Committee
http:www.ut.eeenresearchresearch-ethics-committee
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: Triin Jagomägi
triin.jagomagi@ortodontia.ee
+372 5153634
Useful websites or links
Useful websites or links: http:genomics.ebc.ee
http:www.geenivaramu.eeen
http:www.etag.ee?lang=en
Support group
Support group address: | http:naerulinnud.kolhoos.ee |