Patient interest in the development of a center for Ehlers-Danlos syndrome/hypermobility spectrum disorder in the Chicagoland region.

BACKGROUND: The Ehlers-Danlos Syndromes (EDS) are a group of connective tissue disorders that are hereditary in nature and characterized by joint hypermobility and tissue fragility. The complex nature of this unique patient population requires multidisciplinary care, but appropriate centers for such care do not exist in large portions of the country. Need for more integrated services has been identified in Chicagoland, or Chicago and its suburbs. In order to explore and begin to address barriers to seeking appropriate care facing EDS patients in this region, we developed an online survey which we circulated through EDS social media groups for Chicagoland patients. RESULTS: Three hundred and nine unique respondents participated. We found that there exists a strong medical need for and interest in the development of a center in the region, and participants reported that, if made available to them, they would make extensive and regular use of such a facility. CONCLUSIONS: We conclude that the establishment of a collaborative medical center specializing in the diagnosis and treatment of EDS, Hypermobility Spectrum Disorder, and related disorders in the Chicagoland area would greatly benefit patients by providing comprehensive care, alleviate the burden on overworked healthcare providers, and contribute to the sustainability of medical facilities.

Patient Interest in the Development of a Center for Ehlers-Danlos Syndrome/Hypermobility Spectrum Disorder in the Chicagoland Region.

Background: The Ehlers-Danlos Syndromes (EDS) are a set of connective tissue disorders that are hereditary in nature and characterized by joint hypermobility and tissue fragility. The complex nature of this unique patient population requires multidisciplinary care, but appropriate centers for such care do not exist in large portions of the country. Need for more integrated services has been identified in the Chicagoland region. In order to explore and begin to address barriers to seeking out appropriate care facing EDS patients in this region, we developed an online survey which we circulated through EDS social media groups for Chicagoland patients. Results: Three hundred and nine unique respondents participated. We found that there exists a strong medical need for and interest in the development of a center in the region, and participants reported that, if made available to them, that they would make extensive and regular use of such a facility. Conclusions: We conclude that the establishment of a collaborative medical center specializing in the diagnosis and treatment of EDS, HSD, and related disorders in the Chicagoland area would greatly benefit patients by providing comprehensive care, alleviate the burden on overworked healthcare providers, and generate revenue for medical facilities.

Science, politics and institutional design in regulation.

The politicization of science is a recurring phenomenon in US federal policymaking that is explained in part by the unstructured, collaborative nature of decision-making in most science-intensive US regulatory programs. In this chapter we spotlight some of the most significant worries arising from this longstanding approach to U.S. institutional design for expert agencies and offer recommendations for stronger institutional structures to help guard against the politicization of science.

No one solution to the "new demarcation problem"?: A view from the trenches.

The new demarcation problem asks whether and how we can identify illegitimate values in scientific inquiry. Yet given the multiple contexts and audiences of science advice occurring in practice, a single strategy or set of ex ante criteria may not be the best way to approach this difficult puzzle. This paper offers a mapping of several distinct types of manifestations of the new demarcation problem arising in environmental and health policymaking over the last fifty years and notes their highly divergent features with respect to assessing the illegitimacy of the values in scientific work. The first manifestation of the new demarcation problem involves ensuring that the public and/or their designated representatives are alerted to the embedded values inextricably intertwined in mainstream, communally-held scientific advice that may significantly diverge from the policy audience's preferences in ways that could be considered illegitimate. The second manifestation involves locating ends-oriented or preference biases that sometimes afflict scientific research and advice in the applied world and illegitimately compromise the reliability of that work. Rather than lumping the new demarcation problem into a single set of challenges and evaluating them in isolation from policy context, greater analytical progress could perhaps be made by splitting these challenges into distinct categories and assessing illegitimate values from the standpoint of the differing audiences and policy contexts.

Legal obstacles to toxic chemical research.

Legislative design impedes study of chemicals in the environment.

Presentation and physical therapy management of upper cervical instability in patients with symptomatic generalized joint hypermobility: International expert consensus recommendations.

Experts in symptomatic generalized joint hypermobility (S-GJH) agree that upper cervical instability (UCI) needs to be better recognized in S-GJH, which commonly presents in the clinic as generalized hypermobility spectrum disorder and hypermobile Ehlers-Danlos syndrome. While mild UCI may be common, it can still be impactful; though considerably less common, severe UCI can potentially be debilitating. UCI includes both atlanto-occipital and atlantoaxial instability. In the absence of research or published literature describing validated tests or prediction rules, it is not clear what signs and symptoms are most important for diagnosis of UCI. Similarly, healthcare providers lack agreed-upon ways to screen and classify different types or severity of UCI and how to manage UCI in this population. Consequently, recognition and management of UCI in this population has likely been inconsistent and not based on the knowledge and skills of the most experienced clinicians. The current work represents efforts of an international team of physical/physiotherapy clinicians and a S-GJH expert rheumatologist to develop expert consensus recommendations for screening, assessing, and managing patients with UCI associated with S-GJH. Hopefully these recommendations can improve overall recognition and care for this population by combining expertise from physical/physiotherapy clinicians and researchers spanning three continents. These recommendations may also stimulate more research into recognition and conservative care for this complex condition.

The Intersectionality of Leadership and Service-Learning: A 21st-Century Perspective.

This chapter provides a theoretical orientation to the intersections of the theory and practice of leadership and service-learning. It articulates a set of values to guide leadership educators in their service-learning practice. The authors advocate a critical approach that fosters social justice.

Connecting to Communities: Powerful Pedagogies for Leading for Social Change.

This chapter explores the use of powerful pedagogies such as service-learning, cultural immersion, and community-based research to enhance leadership development. Four key principles are presented that describe how leadership educators can facilitate community-based learning in a way that creates an optimal learning environment for students, while also engaging ethically with individuals and organizations in the community.

The perils of relying on interested parties to evaluate scientific quality.

Recently, there has been a trend in both civil litigation and regulatory law to circumvent the scientific community's collective judgment on the quality of individual studies with an adversarial process of evaluating scientific quality using interest groups. The Supreme Court's Daubert v Merrell Dow Pharmaceuticals, Inc opinion and two recent "good science" laws passed by Congress adopt an adversarial process informed by affected parties for reviewing and screening scientific quality. These developments are unwise. Both theory and experience instruct that an adversarial, interest group-dominated approach to evaluating scientific quality will lead to the unproductive deconstruction of science, further blur the distinction between policy and scientific judgments, and result in poor decisions because the courts and agencies that preside over these "good science" contests sometimes lack the scientific competency needed to make sound decisions.

Commons ignorance: the failure of environmental law to produce needed information on health and the environment.

One of the most significant problems facing environmental law is the dearth of scientific information available to assess the impact of industrial activities on public health and the environment. After documenting the significant gaps in existing information, this Article argues that existing laws both exacerbate and perpetuate this problem. By failing to require actors to assess the potential harm from their activities, and by penalizing them with additional regulation when they do, existing laws fail to counteract actors' natural inclination to remain silent about the harms that they might be causing. Both theory and practice confirm that when the stakes are high, actors not only will resist producing potentially incriminating information but will invest in discrediting public research that suggests their activities are harmful. The Article concludes with specific recommendations about how these perverse incentives for ignorance can be reversed.