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