TO establish the World Cleft Gene Bank Intoduction

Over the past decades, oral clefts have been the focus of numerous studies by both epidemiologists and geneticists.

At the present time, most studies suggested that 70% of cleft lip with or without cleft palate cases are non-syndromic. The remaining 30% are syndromic. Several Mendelian syndromes involving oral clefts have been mapped, such as Van der Woude syndrome, Treacher Collins syndrome, Waardenburg syndrome, and velocardiofacial syndrome. The study of non-syndromic cleft has been complicated by its inheritance pattern. It is depending on geographic origin,racial and ethnic backgrounds, and socioeconomic status. However, additional genetic linkage and association studies are now being used to indentify these genetic factors. Thus it is important to work together to established the research organ.

Its missions are:

• (a) To elucidate etiology of the diseases relating to cleft and to establish methods of therapies for those diseases
• (b) To carry out international joint research for the benefit of patients under the auspices of a nonprofit organization.



The 2000 projects is as follows:

(a) The budget:

ICPF plans to pay total of 100,000 US dollars for the 2000 - 2004 project.

Those subsidies should not be used to cover the whole part of the research expenses at any time.

(b) The subjects of the research:

* Families who have one or more patients with a disease complicated by lower lip pits

* Families who have two or more patients with cleidocranial dysostosis

* Families who have multiple patients with CLP

Ethical principles:

This is one of the most important parts to solve before start. For example, the institution is guided by the ethical principles regarding all research involving humans as subjects as set forth in the report of the National Commission for the protection of Human Subjects of Biomedical and Behavioral Research entitled, Ethical Principles and Guidelines for the Protection of Human Subjects of Research.

Please contact us if any organizations and/or individuales are interested in the projects.

Contact :

World Cleft Gene Bank
ICPF
E-mail : office@icpfweb.org