The Evaluation and Management of Concussion to Optimize Safe Recovery.

Concussion is a mild traumatic brain injury causing temporary neurologic dysfunction. Symptoms following concussion are variable and generally are expected to resolve within about 1 month, but some patients experience persistent and prolonged symptoms. An early return to safe, symptom-limited activity is now favored, using targeted rehabilitation and treatments. Accommodations may be needed to facilitate return-to-school and work following concussion. Athletes should not be cleared for a full return to sport until they have recovered from a concussion and completed a return-to-play progression, in addition to returning to work/school fully.

Understanding Abnormal Examination Findings During Concussion Recovery: A Retrospective Chart Review.

Background and Objective: Physical examination findings in athletes with sport-related concussion (SRC) are not well described in the literature. The objective of this study was to describe physical examination findings during the first month following concussion in athletes, with a focus on the effect of sex, age, and time since injury. Methods: This was a retrospective electronic medical record (EMR) review of physical examination findings in 500 patients aged 6-24 who were initially seen within 15 days of SRC at a multidisciplinary outpatient academic concussion clinic between 2017 and 2019. A standardized concussion examination built in the EMR recorded mental status, cranial nerve, vestibulo-ocular motor screen, and balance findings for all patients. The primary outcome was the frequency of abnormal examination findings during the first 30 days postinjury, which was further analyzed by sex, age, and time since injury using mixed logistic regression models. Results: The most common abnormal examination findings overall were eyes-closed single-leg stance, vestibular-ocular reflex, visual motion sensitivity, the neck examination, and eyes-closed tandem stance. Abnormal findings were more frequent in female athletes for vestibular ocular reflex and visual motion sensitivity. The frequency of abnormal findings increased with age for vestibulo-ocular reflex, visual motion sensitivity, the neck examination, convergence testing, and eyes-open single-leg stance, whereas abnormalities decreased in frequency with age for eyes-open tandem stance and tandem gait. The frequency of abnormal findings generally decreased with time over the first 4 weeks following injury. Discussion: A comprehensive physical examination is pivotal for evaluation of athletes with concussion. These findings highlight high-yield components of the concussion examination and support use of these examination components as injury markers. Future work should investigate associations between physical examination findings and postconcussion symptoms and recovery outcomes. Classification of Evidence: This retrospective cohort study provides Class IV evidence that neurologic examination with specifically designed clinical tests are helpful for diagnosis of traumatic brain injury in young athletes at age 6-24.

Recommendations for Medical Discharge Documentation and Academic Supports for University Students Recovering From Concussion.

OBJECTIVE: This study sought to (1) collate the experiences of university students with concussion history and academic stakeholders through interviews and (2) develop concussion management recommendations for institutions of higher learning using a multidisciplinary Delphi procedure. SETTING: Remote semistructured interviews and online surveys. PARTICIPANTS: The first aim of this study included undergraduate university students with concussion history who did not participate in varsity athletics ( n = 21; 57.1% female), as well as academic faculty/staff with experience assisting university students with their postconcussion academic needs ( n = 7; 71.4% female). The second aim enrolled 22 participants (54.5% female) to serve on the Delphi panel including 9 clinicians, 8 researchers, and 5 academic faculty/staff. DESIGN: An exploratory-sequential mixed-methods approach. MAIN MEASURES: Semistructured interviews were conducted to unveil barriers regarding the return-to-learn (RTL) process after concussion, with emergent themes serving as a general framework for the Delphi procedure. Panelists participated in 3 stages of a modified Delphi process beginning with a series of open-ended questions regarding postconcussion management in higher education. The second stage included anonymous ratings of the recommendations, followed by an opportunity to review and/or modify responses based on the group's consensus. RESULTS: The results from the semistructured interviews indicated students felt supported by their instructors; however, academic faculty/staff lacked information on appropriate academic supports and/or pathways to facilitate the RTL process. Of the original 67 statements, 39 achieved consensus (58.2%) upon cessation of the Delphi procedure across 3 main categories: recommendations for discharge documentation (21 statements), guidelines to facilitate a multidisciplinary RTL approach (10 statements), and processes to obtain academic supports for students who require them after concussion (8 statements). CONCLUSIONS: These findings serve as a basis for future policy in higher education to standardize RTL processes for students who may need academic supports following concussion.

Achieving Consensus Through a Modified Delphi Technique to Create the Post-concussion Collegiate Return-to-Learn Protocol.

BACKGROUND: Sport-related concussions (SRCs) affect millions of adolescents and young adults annually in the USA; however, current SRC consensus statements provide limited guidance on academic support for students within higher education. OBJECTIVE: To generate consensus on appropriate academic recommendations for clinicians, students, and academic stakeholders to support university students during their recovery. METHODS: Panelists participated in three stages of a modified Delphi procedure: the first stage included a series of open-ended questions after reviewing a literature review on post-SRC return-to-learn (RTL) in higher education; the second stage asked panelists to anonymously rate the recommendations developed through the first Delphi stage using a 9-point scale; and the final stage offered panelists the opportunity to change their responses and/or provide feedback based on the group's overall ratings. RESULTS: Twenty-two panelists including clinicians, concussion researchers, and academic stakeholders (54.5% female) from 15 institutions and/or healthcare systems participated in a modified Delphi procedure. A total of 42 statements were developed after round one. Following the next two rounds, 27 statements achieved consensus amongst the panel resulting in the four-stage Post-Concussion Collegiate RTL Protocol. CONCLUSION: There are several unique challenges when assisting university students back to the classroom after SRC. Explicit guidelines on when to seek additional medical care (e.g., if they are experiencing worsening or persistent symptoms) and how to approach their instructor(s) regarding academic support may help the student self-advocate. Findings from the present study address barriers and provide a framework for universities to facilitate a multidisciplinary approach amongst medical and academic stakeholders.

Factor Structure for the Sport Concussion Assessment Tool Symptom Scale in Adolescents After Concussion.

OBJECTIVE: To examine the factor structure of the Sport Concussion Assessment Tool-5 (SCAT5) symptom scale in adolescents on their initial presentation to a concussion clinic within the typical recovery period after concussion (ie, <30 days). We hypothesize that the SCAT5 symptoms represent various clinically meaningful groups. A secondary purpose was to examine the effects of sex on the factor structure of the SCAT5 symptom scale. STUDY DESIGN: Retrospective cross-sectional analysis. SETTING: Tertiary, institutional. PATIENTS: Nine hundred eighty-one adolescents (45% women) aged between 13 and 18 years. INDEPENDENT VARIABLES: Adolescents completed the SCAT5 symptom scale. MAIN OUTCOME MEASURES: The factor structure of SCAT5 examined using a principal axis factor analysis. RESULTS: A 5-factor structure model explained 61% of the variance in symptoms. These 5 factors are identified as Energy (17%), Mental Health (13%), Migrainous (13%), Cognitive (9%), and Vestibulo-Ocular (9%). A similar 5-factor model emerged for each sex, and the proportion of variance in symptoms explained by the 5-factor model was comparable between the sexes. CONCLUSIONS: The findings of this report indicate that the SCAT5 symptoms aggregated into 5 delineated factors, and these factors were largely consistent across the sexes. The delineation of symptoms into 5 factors provides preliminary validation for the presence of different concussion phenotypes. Confirmatory factor analysis is warranted to examine the applicability and clinical utility of the use of the 5-factor structure in a clinical setting.

Does Exercise Increase Vestibular and Ocular Motor Symptom Detection After Sport-Related Concussion?

BACKGROUND AND PURPOSE: Postconcussive vestibular and ocular motor symptoms are common and contribute to longer recovery. The Vestibular/Ocular Motor Screening (VOMS) is used to detect such symptoms, but a VOMS performed at rest may miss symptoms that are only provoked by exertion. Supervised exercise challenges (SECs) have been shown to detect concussion-related symptoms provoked by physical exertion. The purpose of this study was to determine whether athletes undergoing an SEC will exhibit greater symptom provocation with the VOMS compared to a VOMS performed at rest prior to an SEC. METHODS: Thirty-six athletes (58.3% male) between ages 10 and 18 years and within 30 days of concussion were included. All participants completed VOMS assessments at rest and immediately after an SEC. VOMS total symptom score increases were calculated for both pre- and post-SEC assessments compared using Wilcoxon ranked sum tests. The frequencies of positive assessments for each VOMS item were compared using McNemar's test. RESULTS: There were significant increases in post-SEC symptom provocation scores compared with pre-SEC scores for all VOMS items. The post-SEC VOMS identified 29 participants (80.6%) as positive in at least 1 VOMS item compared with 21 participants (58.3%) identified as positive pre-SEC (P = 0.008). For all VOMS items, the post-SEC VOMS identified participants who were previously negative on a pre-SEC VOMS but became positive after the SEC. DISCUSSION AND CONCLUSIONS: An SEC performed prior to a VOMS assessment may increase the detection of vestibular and ocular motor symptoms that may be missed if the VOMS was performed only at rest.Video Abstract available for more insight from the authors (see the Video Supplemental Digital Content 1, available at: http://links.lww.com/JNPT/A342).

Do male and female adolescents report symptoms differently after concussion?

We investigated sex-based differences in the presence and severity of aggregated symptom indicators as well as individual concussion symptoms.Materials and Methods: A cross-sectional examination of sex differences in symptoms reported by adolescents upon initial concussion evaluation at a concussion clinic. Nine hundred and eighty-six adolescents completed the Sport Concussion Assessment Tool (SCAT5) symptom checklist. Chi-square and Mann-Whitney U tests were used for differences in the presence and severity of symptoms, respectively. Sex differences in global indices of symptom distress were compared.Results: Females endorsed more symptoms (Female: Median (M)=15, Interquartile range (IQR):9-18 vs. Male: M=11, IQR: 6-15, p<0.001) and a greater total symptom score (Female: M=37, IQR:16-45 vs. Male: M=20, IQR:8-39). After False Discovery Rate (FDR) adjustment, females endorsed the presence of 21 of 22 individual symptoms more frequently than males (p≤ 0.039), with greater symptom severity for 20 of 22 individual symptoms (p≤0.036). Moderate ESs were observed for sex-based differences in the total symptom score and the global severity index. Small ESs was observed for differences in most individual symptoms.Conclusions: The greater frequency and severity of concussion symptoms reported by female adolescents highlights the importance of considering sex as a modifier for the management of concussion.

Symptom Provocation During Aerobic and Dynamic Supervised Exercise Challenges in Adolescents With Sport-Related Concussion.

CONTEXT: Supervised exercise challenges (SECs) have been shown to be safe and beneficial in the early symptomatic period after concussion. Thus far, most in-clinic SECs studied have included a form of basic aerobic exercise only. An SEC that also includes dynamic forms of exercise mimics all steps of a standard return-to-play progression and may enhance the detection of concussion symptoms to guide in-clinic management decisions. OBJECTIVE: To determine whether an SEC that includes a dynamic SEC (DSEC) uncovered symptoms that would not have been identified by an SEC involving an aerobic SEC (ASEC) alone in adolescent patients with sport-related concussion. DESIGN: Retrospective case series. SETTING: Multidisciplinary sport concussion clinic at a tertiary care center. PATIENTS OR OTHER PARTICIPANTS: A total of 65 adolescent athletes (mean age = 14.9 ± 2.0 years, 72.3% males) who underwent an in-clinic SEC within 30 days of concussion. MAIN OUTCOME MEASURE(S): Presence of pre-exercise symptoms and symptom provocation during the SEC were recorded, with exercise-provoked symptoms categorized as occurring during ASEC or DSEC. RESULTS: Of the total patient sample, 69.2% (n = 45/65) experienced symptom provocation at some point during the SEC. Symptoms were provoked in 20 patients during the ASEC, whereas 25 completed the ASEC without symptom provocation before becoming symptomatic during the subsequent DSEC and 20 completed the SEC without any symptom provocation. Of the 65 patients in the total sample, 46 were asymptomatic immediately before the SEC. Of these previously asymptomatic patients, 23.9% (n = 11/46) experienced symptom provocation during the ASEC, and an additional 37.0% (n = 17/46) remained asymptomatic during the ASEC but then developed symptoms during the DSEC. CONCLUSIONS: The ASEC alone may not detect symptom provocation in a significant proportion of concussion patients who otherwise would develop symptoms during a DSEC.

Use of Supervised Exercise During Recovery Following Sports-Related Concussion.

OBJECTIVE: To assess the safety of supervised exercise (SE) in acute sport-related concussion (SRC) and its influence on recovery. DESIGN: Retrospective cohort study. SETTING: University SRC clinic at a tertiary care center. PATIENTS: One hundred ninety-four consecutive new patient charts were reviewed. Patients were included if they were seen within 30 days of sustaining a SRC, and their medical records included all required data elements. One hundred twenty-six patients were included in the analysis. INTERVENTIONS: Symptomatic patients who initiated SE within 16 days of SRC (n = 24) were compared with those who did not undergo SE or initiated SE after postinjury day 16 (n = 84). Age, sex, history of previous concussions, injury severity, relevant comorbidities, and other treatments received were included in the analysis. MAIN OUTCOME MEASURES: The association between early SE and clearance for return to sport was determined using a hazard ratio (HR). The number of days from SRC until clearance for return to sport and the number of days symptomatic from concussion were also compared between early SE and nonearly SE cohorts. RESULTS: No serious adverse events occurred in the early SE group. Early SE was associated with earlier return to sport (HR = 2.35, P = 0.030). The early SE group had fewer days from SRC until clearance for return to sport (mean 26.5 ± 11.2 days vs 35.1 ± 26.5 days, P = 0.020). There was a trend toward fewer symptomatic days in the early SE group (P = 0.054). CONCLUSION: Early SE performed in the symptomatic stage of SRC was safe and associated with earlier return to sport.

A Demand for Data to Improve Outcomes Creates the Why to Move to Third Generation Immunization Information Systems.

Investments over the past two decades to collect and store immunization events established a national population health data asset. The ability to track vaccine usage and storage has increased accountability, lowered wastage, protected valuable resources, and provided the correct vaccines at the right time. Sixty-four immunization registries support the current immunization ecosystem, yet all investments to date have been through state and federal funding. Much of the technology supporting these registries is becoming harder to support, limiting the utilization of the data. For the most part all current systems have legacy 2nd-generation technology and architectures as their foundation Current technology investments in these national assets tend to be for systems that within the next five years will not be cost effectively sustainable with only federal, state and local funding. Yet quality data is being reported by immunization providers across the health care network that is increasing exponentially through electronic data exchanges integrated within Electronic Health Records (EHR) and Pharmacy Management Systems (PMS) This increase in high-quality patient immunization records creates opportunity to build immunization intelligence from the data. However, 2nd-generation Immunization Information Systems (IIS) limit the effective and timely use of this information. Considering the increasing value of the data to public and private sectors working to close immunization care gaps in populations, supporting technology must ensure easy access This is the first of two papers that highlights the power of these national registries and the data they contain to provide opportunity intelligence to the immunization ecosystem user community. Paper one illustrates the "why" for change and the need for a truly community collaborative path forward to move from 2nd- to 3rd-generation systems through partners that leverages cost sharing and common goals The end goal is to establish new supporting technology assets that accelerate the use of data to impact vaccine preventable disease (VPD) outcomes which create a new model for public-private investments to sustain the IIS national infrastructure. The second a working paper with assumptions to be tested ("Model for Sustaining and Investing in Immunization Information Systems"), shares cost and investment strategies to complete the migration and create sustainable immunization systems for the future.

A Model for Sustaining and Investing in Immunization Information Systems: Authors.

In the past three years, Scientific Technologies Corporation electronically sent one-hundred fifty million retail pharmacy patient immunization events to state and community public health immunization information systems. Today, as a conservative estimate, over 85% of the U.S. population has an immunization record in an electronic health information system. Health technology, data exchange and increasing online patient health records offer consumers, providers and the immunization community new platforms to proactively identify vaccine coverage gaps. As the value of online immunization information increases, the cost to sustain and leverage these new technologies escalates. Online immunization records and integrated decision support tools are being used extensively from the pharmacy to the emergency room. They are moving from health data vaults with few users to more ubiquitous point of care services and direct consumer engagement. The data and the supporting technology infrastructure empower the community within the immunization ecosystem. To use this opportunity to reduce the impact of vaccine preventable disease on populations, investment in sustaining and modernizing existing immunization health technology systems suggest models to articulate their value and return on investment. This paper illustrates cost and technology drivers that impact sustainability and modernization of the immunization information system infrastructure. It provides a model to support investment priority decisions and estimate costs. It reviews the technical evolution of public health immunization registries and their current legacy state providing a pathway to migrate to opportunistic third generation technology platforms. It will answer: How much should be budgeted? What can this budget achieve over the next five years? What investments should be prioritized? Is there opportunity for public-private partnerships to support sustainment cost sharing? It shows that an investment of fifty million will modernize a quarter of the current second generation immunization systems and support the remainder over the next five years.

The Power of Consumer Activism and the Value of Public Health Immunization Registries in a Pandemic: Preparedness for Emerging Diseases and Today's Outbreaks.

Public Health immunization registries and the immunization ecosystem have evolved over the past two decades to become significant population health data assets. Clinical providers and pharmacists are reporting the immunizations given to their patients to public health registries in 49 states and all territories, creating consolidated immunization event patient records. Most of these immunization events are reported through the provider's Electronic Health Record system (EHR), Pharmacy Management System (PMS), online, or through data uploads. Meaningful Use and health data standards (HL7) became the drivers that accelerated reporting to immunization registries and significantly improved the quantity and quality of the data. The infrastructure supporting the Immunization Ecosystem (IE) has enabled real-time compliance reporting and, more importantly, real-time patient queries. The provider community now has online access to a patient's immunization history in over three quarters of the states, and growing. This access includes a forecast of the patient's immunization gaps provided by public health decision support tools based upon the most recent ACIP recommendations. This is creating an opportunity for the provider and the patient to work together to reduce their risk of suffering a vaccine-preventable disease. This IE and the data in an Immunization Information System (IIS) are especially useful as pharmacies expand their immunization practices and create opportunities to reduce the adolescent and adult immunization gaps. In a few states, this provider-public health ecosystem has begun to extend to individuals by allowing them to access the IIS online through the use of MyIR. MyIR provides them with the electronic version of their immunization "yellow cards," recommendations for immunizations due, and the ability to print official certificates. This emerging consumer engagement creates opportunities to empower individuals to be more proactive in their family's health care. This paper builds upon early experiments to empower individuals in this ecosystem by leveraging the value of these public health data assets and trusted communications, illustrating the possibilities for engaging consumers to support reducing the impact of emerging diseases, outbreaks and the next pandemic. This paper will suggest the value of the IE and the role individuals can play within their own social networks to advance public health efforts to manage disease events. In turn, this social mission would encourage consumers to be more proactive in managing their own healthcare.

Observations Illustrating the Use of Health Informatics to Link Public Health Immunization Registries and Pharmacies to Increase Adult Immunization Rates and Improve Population Health Outcomes.

The Health Information Technology for Economic and Clinical Health (HITECH) Act encourages health information exchange between clinical care and public health through Meaningful Use measures. Meaningful Use specifically identifies objectives to support a number of public health programs including immunizations, cancer registries, syndromic surveillance, and disease case reports. The objective is to improve public and population health. Stage 2 of Meaningful Use focused on compliance to sending of information to public health. The next phase focuses on bi-directional information exchange to support immunization intelligence and to empower providers, pharmacists, and the consumer. The HITECH Act Stage 2 initiative provided incentive and motivation for healthcare providers to encourage their Electronic Medical Record (EMR) vendors to implement data exchanges with public health, with the expected result being timely awareness of health risks. The empowerment nugget in the HITECH Act is not in the compliance reporting to public health. The nugget is the ability for a provider to receive relevant information on the patient or consumer currently in front of them or to those they will connect to through their outreach efforts. The ability for public health to retain current immunization records of individuals from a variety of providers supports their program goals to increase immunization rates and mitigate the risk of vaccine-preventable disease (VPD). The ability for providers to receive at the point of service more complete immunization histories integrated with decision support enhances their delivery of care, thereby reducing the risk of VPD to their patients. Indirectly payers benefit through healthcare cost savings and when the focus is expanded from a health model to a business model, there are significant return on investment (ROI) opportunities that exponentially increase the value of a bi-directional immunization data exchange. This paper will provide descriptions of case examples to demonstrate the value of electronic data exchanges when pharmacy immunization providers and public health work together.

The potential value of Clostridium difficile vaccine: an economic computer simulation model.

Efforts are currently underway to develop a vaccine against Clostridium difficile infection (CDI). We developed two decision analytic Monte Carlo computer simulation models: (1) an Initial Prevention Model depicting the decision whether to administer C. difficile vaccine to patients at-risk for CDI and (2) a Recurrence Prevention Model depicting the decision whether to administer C. difficile vaccine to prevent CDI recurrence. Our results suggest that a C. difficile vaccine could be cost-effective over a wide range of C. difficile risk, vaccine costs, and vaccine efficacies especially, when being used post-CDI treatment to prevent recurrent disease.

Colorectal cancer screening - using informatics and compunetics to empower the at-risk individual.

Population-based cancer screening is most effective and cost efficient when offered through an organized screening program that incorporates all elements of the screening process, including information systems that support optimal program operation, monitoring, and evaluation. Although it is well accepted that organized population-based cancer screening programs can effectively reduce mortality, little effort has been invested in designing, developing, and implementing information systems to support these programs. This paper presents a prototype information management system for organized population-based cancer screening. A typical colorectal cancer screening program was modeled for illustration of organized cancer screening workflow, key functional features were investigated, and a system infrastructure and architecture designed. The system as designed facilitates the sharing and management of information among the many stakeholders involved in the program (e.g., participant, family physician, specialist, hospitals, laboratories pharmacist). Throughout the functional design phase of this project, empowerment of the-at risk individual with access to personalized information and support was the core consideration. The leveraging of existing health records to facilitate risk profiling, and the proactive engagement and education of individuals with personalized information were considered key functional requirements of the system. The system was designed to provide participants with easy web-enabled access to view their status in the cancer screening program, and on-line resources to facilitate scheduling of activities, updating of personal profiles, and access to additional relevant information. By proactively engaging individuals, providing them with personalized information, and facilitating their involvement in the cancer screening program with easy-to-use information management tools, the likelihood of program enrollment and participation will be greatly increased.

Immunizations: the first step in a personal health record to empower patients.

Despite the promise of better health care through information-centric patient empowerment, little progress has been made. The issue is not that the data do not exist in a useable form, nor that technologies are lacking that would enable access to this information. There are two primary challenges standing in the way of patient empowerment: (1) in the private sector there is no proven revenue model for providing this access and (2) in the public sector the standard argument is confidentiality of information. The lack of a priority by either private or public health providers to empower individuals will lead to these initiatives being consumer driven. Access to immunization records through health informatics and supporting compunetics presents an easy-win opportunity to significantly empower individuals with their own health information. Scientific Technologies Corporation (STC) has been implementing and supporting immunization registries in North America for over fifteen years. As the leading expert in this area, STC has developed a process for achieving successful large-scale access to personal immunization records with minimal investment. As a first step to empower individuals with on-line access to their immunization records, the STC approach leverages the technical frameworks established for health insurance and 3rd party payer environments linking to statewide immunization information systems. The individual is provided access to their records through their insurer's health portal. This is populated through electronic exports of member immunization records as retrieved from state or provincial registries that contain provider-supplied patient records, allowing individuals to utilize these hosted services or download their provider administered records into their personal health record. Individuals have the ability to review their immunization and their family immunization histories. They have the ability to know when an immunization is due, where vaccines are available, and which vaccines minimize risks to disease. For the emerging industry of on-line personal health records, a patient's immunization record will be the single most important factor to demonstrate success for patient empowerment. It will create a roadmap to support the inclusion of other medical information.

Empowering patients and researchers through a common health information registry: a case example of adrenocortical carcinoma patients and researchers.

Adrenocortical Carcinoma is a rare malignant tumor that forms in the outer layer of tissue of the adrenal gland, which is a small gland situated on the anteriosuperior aspect of the kidneys. These glands produce steroid hormones, adrenaline, and noradrenaline that control heart rate, blood pressure, and other body functions. Because this cancer affects a limited number of patients, it is referred to as an Orphan disease, which is defined as a condition that affects fewer than 200,000 people nationwide. Internationally, there are 5,000-8,000 such diseases affecting an estimated 55 million people. There is often limited medical intervention for many of these conditions. With a small number of patients, and a correspondingly small number of providers and researches, this disease is a candidate for establishing a shareable information system that is used by the patient, provider, and researcher. This resource empowers the patient to support their care and treatment while allowing medical providers and researches to have valuable and broad access to patient activities and behaviors that may impact their treatment. Orphan disease registries are prime candidates for establishing health information resources that support communications between patients, providers, and researchers. As a resource, this information can be used to facilitate treatment protocols to include biomarker identification, testing and monitoring of new drugs. By empowering a common community of individuals that share a common disease, the potential to accelerate research and identify improved treatment options may also increase. This paper presents a strategic plan and design for implementing Orphan disease registries within an e-health environment that specifically links patients and providers with researchers. The Adrenocortical Carcinoma Registry will be used to demonstrate the implementation and potential of these systems.

Applied medical & care compunetics to public health disease surveillance and management: Leveraging external data sources--a key to public health preparedness.

In today's global community the ability to prepare for a disease outbreak in order to mitigate the public health, social, and economic impacts on a community depends upon data to support the decision and response process. Data can come from a variety of sources. These sources not only include the medical and health care community, but also geographic, demographic, and socio-economic data. The ability to capture and utilize the data effectively from these types of data sources can mean the difference between a manageable disease outbreak that represents little or no threat to a community and one that causes a significant social and economic impact. As the health profession expands the applied use of information technology within the medical and health care communities, opportunities are created to expand the use of new data sources to support information based decisions. Information that can be used to provide early warning for disease outbreaks both naturally occurring or through a bioterrorist event; information that can be used to plan, analyze and respond to a disease event; information that can support a community's preparedness activities in order to minimize a public health event. This chapter illustrates how applied compunetics can be used to support health care as the public health professional responds to, and manages, naturally occurring diseases as well as emerging new disease threats. An electronic health environment (EHE) vision is presented that capitalizes on the use of a variety of environmental, medical, and health care data to support disease early warning, reporting, case and outbreak management and community preparedness.

Health informatics: a roadmap for autism knowledge sharing.

With the prevalence of diagnosed autism on the rise, increased efforts are needed to support surveillance, research, and case management. Challenges to collect, analyze and share typical and unique patient information and observations are magnified by expanding provider caseloads, delays in treatment and patient office visits, and lack of sharable data. This paper outlines recommended principles and approaches for utilizing state-of-the-art information systems technology and population-based registries to facilitate collection, analysis, and reporting of autism patient data. Such a platform will increase treatment options and registry information to facilitate diagnosis, treatment and research of this disorder.