Social and ecological effectiveness of large marine protected areas

This is the author accepted manuscript. The final version is available from the publisher via the DOI in this record.Large marine protected areas are increasingly being established to meet global conservation targets and promote sustainable use of resources. Although the factors affecting the performance of small-scale marine protected areas are relatively well studied, there is no such body of knowledge for large marine protected areas. We conducted a global meta-analysis to systematically investigate social, ecological, and governance characteristics of successful large marine protected areas with respect to several social and ecological outcomes. We included all large (>10,000km2), implemented (>5 years of active management) marine protected areas that had sufficient data for analysis, for a total of twelve cases. We used the Social-Ecological Systems Meta-Analysis Database, and a consistent protocol for using secondary data and key informant interviews, to code proxies for fisheries, ecosystem health, and the wellbeing of user groups (mainly fishers). We tested four sets of hypotheses derived from the literature on smallscale marine protected areas and common-pool resources: (i) the attributes of species and ecosystems to be managed in the marine protected area, (ii) adherence to principles for designing small-scale marine protected areas, (iii) adherence to the design principles for common-pool resource management, and (iv) stakeholder participation. We found varying levels of support for these hypotheses. Improved fisheries were associated with older marine protected areas, and higher levels of enforcement. Declining fisheries were associated with several ecological and economic factors, including low productivity, high mobility, and high market value. High levels of participation were correlated with improvements in wellbeing and ecosystem health trends. Overall, this study constitutes an important first step in identifying factors affecting social wellbeing and ecological performance of large marine protected areas.NCB thanks SSHRC and NSERC. CMB was supported by the Price Fellowship and Stanford University’s Emmett Interdisciplinary Program in Environmental Resources. GE is supported by a SSHRC postdoctoral fellowship. We gratefully acknowledge participants of our key informant interviewsThis is the author accepted manuscript. The final version is available from the publisher via the DOI in this record

Guidelines for the Development of Comprehensive Care Centers for Congenital Adrenal Hyperplasia: Guidance from the CARES Foundation Initiative

Patients with rare and complex diseases such as congenital adrenal hyperplasia (CAH) often receive fragmented and inadequate care unless efforts are coordinated among providers. Translating the concepts of the medical home and comprehensive health care for individuals with CAH offers many benefits for the affected individuals and their families. This manuscript represents the recommendations of a 1.5 day meeting held in September 2009 to discuss the ideal goals for comprehensive care centers for newborns, infants, children, adolescents, and adults with CAH. Participants included pediatric endocrinologists, internal medicine and reproductive endocrinologists, pediatric urologists, pediatric surgeons, psychologists, and pediatric endocrine nurse educators. One unique aspect of this meeting was the active participation of individuals personally affected by CAH as patients or parents of patients. Representatives of Health Research and Services Administration (HRSA), New York-Mid-Atlantic Consortium for Genetics and Newborn Screening Services (NYMAC), and National Newborn Screening and Genetics Resource Center (NNSGRC) also participated. Thus, this document should serve as a “roadmap” for the development phases of comprehensive care centers (CCC) for individuals and families affected by CAH

Guidelines for the Development of Comprehensive Care Centers for Congenital Adrenal Hyperplasia: Guidance from the CARES Foundation Initiative

Patients with rare and complex diseases such as congenital adrenal hyperplasia (CAH) often receive fragmented and inadequate care unless efforts are coordinated among providers. Translating the concepts of the medical home and comprehensive health care for individuals with CAH offers many benefits for the affected individuals and their families. This manuscript represents the recommendations of a 1.5 day meeting held in September 2009 to discuss the ideal goals for comprehensive care centers for newborns, infants, children, adolescents, and adults with CAH. Participants included pediatric endocrinologists, internal medicine and reproductive endocrinologists, pediatric urologists, pediatric surgeons, psychologists, and pediatric endocrine nurse educators. One unique aspect of this meeting was the active participation of individuals personally affected by CAH as patients or parents of patients. Representatives of Health Research and Services Administration (HRSA), New York-Mid-Atlantic Consortium for Genetics and Newborn Screening Services (NYMAC), and National Newborn Screening and Genetics Resource Center (NNSGRC) also participated. Thus, this document should serve as a "roadmap" for the development phases of comprehensive care centers (CCC) for individuals and families affected by CAH.The authors graciously thank all participants, focus group participants, and the staff and Board of Trustees of CARES Foundation, Inc. They express their gratitude to the New York-Mid-Atlantic Consortium for Genetics and Newborn Screening Services (NYMAC) and the National Newborn Screening and Genetics Resource Center (NNSGRC) for their financial support of this consensus conference.Supported by funding from Health Research and Services Administration (HRSA), New York-Mid-Atlantic Consortium for Genetics and Newborn Screening Services (NYMAC), and National Newborn Screening and Genetics Resource Center (NNSGRC). This research was supported (in part) by the Intramural Research Programs of theEunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), and the National Institutes of Health Clinical Center