Estonian Cleft Team (University of Tartu + North Estonia Medical Center, Tallinn)
Principle contact details
| Contact name: | Triin Jagomägi |
| Address: | University of Tartu, Department of Stomatology Raekojapl. 6, Tartu 51003, Estonia |
| Country: | Estonia |
| Telephone: | 3725153634 |
| Email: | triin.jagomagi@ortodontia.ee |
| Web address: | Visit website |
Other team members
| Surgeon: | Marianne Soots (Tartu), Airi Sokk, Heleia Nestal-Zibo (Tallinn) |
| Speech therapist: | Reet Veenpere (Tartu); Birgit Kaasik, Veronika Raudsalu (Tallinn) |
| Orthodontist: | Triin Jagomägi (Tartu, Tallinn), Katri Herman (Tallinn) |
| Clinical geneticist: | Katrin õunap, Riina Žordania, Kairit Joost |
| Otolaryngologist: | Priit Kasenõmm (Tartu),Aet Saarts, Marika Tirmaste, K. Lüüs (Tallinn) |
| Specialist nurse: | S. Müürsepp |
| Psychologist: | T. Tänavsuu |
| Patient follow up: | Triin Jagomägi, Airi Sokk |
Support group
| Support group address: | http:naerulinnud.kolhoos.ee |
Annual case load
| Cleft palate: | 6 |
| Cleft lip (CL) Unilateral (UCL): | 4 |
| Bilateral (BCL): | 1 |
| Number of syndromic cases: | 3 CL, 5 CLP, 6CP |
Primary surgical protocol
Timing of first repair and type of operation.
| Complete UCLP: | lip 4-6 months, palate 1-1,5years |
| Complete BCLP: | lip 4-6 months, palate 1-1,5years |
| Isolated CP: | 1-1,5 years |
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 |
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 |
| Comments on the service provision: | orthodontics and speech and langue is covered by insurance up to 19 years |
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 |
Current research activity and data collection
| 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 |
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 clinical research activities
Clinical research activities interested in being involved in:
| Randomised clinical trials: | Yes |
| Inter-centre comparison of outcome: | Yes |
| Prospective study: | Yes |
| DNA collection: | Yes |
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 |
Total number of cases per annum
| Total cases per annum: | 14 (2011) |