Cardiac Health Registry | Great Ape Heart Project
Heart disease or cardiovascular disease (CVD) is a major cause of mortality in all four great ape genera managed in captivity (Bonobos, Chimpanzees, Gorillas, & Orangutans.) The Great Ape Heart Project (GAHP), on a quest to understand the underlying causes of CVD, required a platform for identifying disease patterns across a global population of apes. GAHP Project and Database Manager Dr. Marietta Dindo Danforth captured the difficulty of the task,
"One of the biggest challenges we have faced has not been the willingness to collaborate among zoos – but actually defining what cardiac disease is and its causes."
With no efficient method to associate clinical data with postmortem findings, it is difficult to identify and report comparable or divergent CVD trends in the multiple ape taxa. Development of an effective approach to diagnose, treat and monitor heart disease in apes is limited by the lack of a centralized system that organizes data coordination, inter-institutional sharing and ensures data security. This further curbs critical retrospective and prospective CVD investigations and impedes ape management groups from forming alliances with Subject Matter Experts (SMEs).
Since the early 1990s, CVD has been a growing concern for caregivers of great apes and, given the limitations described above, inspired the GAHP with a goal to improve the health and welfare of captive great apes and reduce mortality by facilitating collaboration, communication and connection between institutions housing great apes, zoo vets and SMEs.
The GAHP aimed to coordinate dedicated SMEs to provide a network of clinical, pathologic, and research strategies to understand and treat CVD in all the ape species. Animal records are kept locally at zoos and data is not collected in a standardized fashion to monitor for CVD-relevant trends. To remedy this, GAHP disseminated a standardized submission form to serve as a guide for more focused examinations and postmortem evaluation. This served to streamline the process of getting this CVD-relevant data from its local institution to the GAHP. However, the existing cardiac exam database consisted of manual maintenance, sharing and data aggregation of digital and hard-copy spreadsheets, shipped to and stored locally at Zoo Atlanta, and did not employ any software solution to manage data collection, storage, or secure sharing across numerous institutions and SMEs.
Prelude Dynamics was approached to develop a user-friendly, integrated, and cohesive web-based database solution that would adhere to GAHP’s values and mission. As stated by Danforth,
"Prelude Dynamics was recommended to us by the University of Georgia College of Veterinary Medicine and colleagues at Texas A&M who had a similar project to ours and who were extremely satisfied with the level of service and support from Prelude over the past decade. Knowing about their experiences and outcomes was not only reassuring for us, but it also meant that Prelude had a deeper understanding of our needs than other companies that have not dealt with zoos or the veterinary community."
The GAHP required a database that could securely capture heart health data, medical reports, labs, digital ECG imagery, and necropsy reports, including file uploads, in a unified electronic patient record that would travel virtually with apes from zoo to zoo; provide mechanisms to standardize collected data to generate reliable reports, identify trends and make comparisons; allow establishment of familial relationships between apes; and allow continuous entry of new apes to the registry. While species-specific users would encounter a registry filled only with those apes applicable to their expertise, the managers at GAHP would have access to a cumulative registry of all great apes in all taxa or filter by species. The initial database would be prepopulated with historical data from multiple existing sources both digital and hard-copy. Additionally, the database would allow cross-taxa CVD data input and analysis that could be maintained by Dr. Danforth for years to come.
Prelude Dynamics’ established robust clinical trial management and electronic data capture (EDC) system, VISION, was selected as the platform for the Great Ape Cardiac Registry for its customization-ready, secure foundation that would ably meet the centralization and standardization needs of GAHP. Danforth emphasized,
"What set Prelude apart from the competitors was the level of customer service we experienced from the very beginning."
Prelude’s Project Managers worked directly with Dr. Danforth and the GAHP team to customize a database that allows SMEs, cardiologists, pathologists, advisors and researchers to access species, institution, and ape-specific exam and pathology data in a single registry. The customized database allows users to create and maintain cardiac exam and pathology data, upload massive ECG and other medical test files, which are stored and accessible in the system, summarize health data, transfer apes and their data between institutions, record and automatically link familial relationships, and generate search and ad-hoc reporting functions, all while facilitating clean and standardized data in real-time.
The database was initialized with existing cardiac exams and pathology data through a custom-built studbook and historical data uploader. When the GAHP Cardiac Registry launched, it had records from 69 institutions covering 446 individual apes and representing all four relevant species, including over three decades of global cardiac exam data for living and deceased apes - from a newborn orangutan to a 60-year old bonobo.
"The most immediate and valuable solution that VISION™ provides us is the ability to log in and access our complete cardiac medical records from any place at any time by multiple users," Danforth said.
Medical exams can be created on-demand with a single click, and encompasses echocardiogram, electrocardiogram, blood work and anesthesia records. Authorized users have the opportunity to upload images, videos, and other files, and record detailed heart health information directly in VISION, at the time of exam or after. Uploaded material can be viewed or downloaded with the click of a link. Lab results from each exam are compared to preset lab normal ranges and out-of-range values are flagged, allowing the veterinarian to determine clinical significance.
"When an ape is sick and a zoo is looking for immediate interpretation and advice on a cardiac case, we are able to use VISION™ to collect and coordinate exam data and expedite the review and feedback process," states Danforth.
The necropsy data collection section includes multiple forms that collect data consistent with a typical workflow, and populates a report with basic demographic information, familial history of the disease, other possible causative zoonotic diseases, summarizes information from the last three exams, and allows the veterinarian to provide additional information, including the upload of files, and address the pathologist directly. Additionally, the necropsy report lists archived or frozen tissues or slides and their storage location for future analysis.
Interactive graphs allow examination of different factors influencing the health of an individual ape in comparison to a particular species or to all apes in the system. VISION’s summaries allow at-a-glance monitoring of each site or the entire registry; and the search and filter capabilities display summaries for only the apes fitting the search criteria. Additionally, designated users can create ad-hoc reports to further examine the data, which is available globally, 24 hours a day.
Results & Benefits
Prelude staff trained GAHP personnel to utilize VISION™ to globally collect data on Great Ape heart health, which is accessible in real time for entry, review, analysis and export, including access to uploaded exams, images, and reports. Lab results are compared to set normals and outliers flagged for analysis. The GAHP Cardiac Registry launched in February 2015 and is poised for growth as data is expanded for the existing registered population and new institutions and apes are added. The system enables users to distinguish and examine data trends to report on emerging cardiac health patterns in localized and global populations, and anywhere in between.
About Prelude Dynamics
Prelude Dynamics is an industry leader at providing innovative software-as-a-service technology solutions for clinical trials across the globe. The company’s flagship product, VISION, offers secure and configurable data capture and information awareness tools for the advancement of human and animal health, compliant with FDA/CVM and EMEA regulations. VISION™ facilitates real-time data collection, querying, cleaning, reporting, and analysis all based on the needs of the researchers. The company was established in 2003 with a goal to speed the study process, improve data quality, and facilitate easy data entry through automation.