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Please read through the information provided pertaining to this plan and provide us feedback. Your feedback will help us as we examine how we can meet the genetic needs of North Dakotans. We value your input as we complete this final product. You may contact our office regarding your input at 701-777-4277, or you may email us with your suggestions to jbrown@medicine.nodak.edu. This plan will be posted on our website for public comment until August 24, 2007. It will then go for a final review to the committee members and is scheduled to go to the printer September 1, 2007. Thank you and we look forward in hearing from you.

EXECUTIVE SUMMARY

INTRODUCTION

 I. DEMOGRAPHIC PROFILE

          HISTORY OF GENETIC SERVICES

II. CURRENT CLINICAL GENETIC SERVICES

          OTHER GENETIC RELATED CLINICS

          LABORATORY SERVICES

           ND TERATOGEN INFORMATION SERVICE

          COLLABORATIVE GENETIC SERVICES

                    Fetal Acohol Syndrome {FAS} Center

                    Newborn Screening Program

                    Children's Special Health Services (CSHS)       

                    Universal Newborn Hearing Screening 

                    ND Birth Defects Monitoring System          

                    Other State Support Services Related to Genetics

          GENETIC TEACHING/EDUCATIONAL AND RELATED ACTIVITIES

III. NEEDS ASSESSMENT AND THE DEVELOPMENT OF A STATE      GENETICS PLAN

          PROCESS

          RESULTS OF FOCUS GROUP SURVEY

          RESULTS OF HEALTH PROFESSIONAL SURVEY

          RESULTS OF CONSUMER SURVEY

          RECURRING THEMES

          SUMMARY OF RECOMMENDATIONS

IV. RECOMMENDATIONS, OBJECTIVES AND ACTION ITEMS

          ASSURE AND ENHANCE THE AVAILABILITY AND ACCESSIBILITY OF QUALITY                           AND COMPREHENSIVE GENETIC SERVICES FOR ALL NORTH                                      DAKOTANS

          PROMOTE EARLY IDENTIFICATION AND TREATMENT OF INDIVIDUALS WITH                           BIRTH DEFECTS, HERITABLE DISORDERS OR GENETIC                                      SUSCEPTIBILITIES THROUGHOUT THE LIFECYCLE

          INCREASE PUBLIC AND PROFESSIONAL AWARENESS OF GENETICS,                                      INCLUDING SERVICES AND RESOURCES

          EXPAND AND ENHANCE PARTNERSHIPS TO SUPPORT GENETIC                                      SERVICE SYSTEMS

          PROMOTE THE DEVELOPMENT OF PUBLIC POLICY THAT PROTECTS                                      INDIVIDUAL AND FAMILY HEALTH AND PRIVACY, WHILE SUPPORTING                           ADVANCEMENTS IN GENETIC SCIENCE AND TECHNOLOGY

V.   REFERENCES

VI. ACKNOWLEDGEMENTS

VI. APPENDICES

          APPENDIX A-1 ~ CURRENT GENETIC CLINIC SITES

          APPENDIX A-2 ~ NUMBER OF PATIENTS SEEN AT CLINIC SITES

          APPENDIX B-1 ~ GENETIC CASELOAD COMPARISON TO                                   SUPPORTED FUNDING

          APPENDIX B-2 ~ SOURCES OF GENETIC FUNDING

          Definations ~ Genetic Terminologyy