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Experience of Supporting Telemedicine Networks With the Collegium System: First 6 Years.

ABSTRACT: The Collegium system was first made available in 2012 to support organizations conducting humanitarian or non-commercial telemedicine work in low resource settings. It provides the technical infrastructure necessary to establish a store-and-forward telemedicine service. During the subsequent 6 years a total of 46 networks were established, based on the Collegium infrastructure. The majority of the networks were set up to provide a clinical service (33), with six designed for education and training, and the remainder for test or administrative purposes. Of the potentially operational networks which were set up (i.e., those established for clinical or educational purposes), 15 networks (38%) were stillborn and did not handle a single case after being established. In contrast, the two most active networks had handled almost 12,000 cases. The average case rate of the five most active clinical networks operating in low-resource settings (i.e., the total number of cases divided by the length of time for which the network had been established) ranged from 0.5 to 29.4 cases/week. Across the networks there was little evidence of sigmoidal growth in activity, which is consistent with reports of other telemedicine activity in North America. A brief survey was sent to 49 network coordinators, from 31 networks. Responses were received from 9 coordinators (18% of those invited to participate). The median satisfaction with the system was 8 (on a scale from 1 = not at all satisfied to 10 = very satisfied). The free text comments were mainly technical suggestions regarding image transfer, the mobile application, or other modes of communication. The results of operating the Collegium system demonstrate that supporting telemedicine work in low resource settings can be successful, since the networks handled a very wide range of clinical cases, and at activity levels up to several cases per day. However, approximately one-third of the networks that were established did not handle a single clinical case. Nonetheless, this might represent a form of success in the sense that it prevented the waste of resource involved in an organization purchasing a telemedicine infrastructure only to find that it was not used.

SUBMITTER: Wootton R

PROVIDER: S-EPMC6712066 | biostudies-literature | 2019

REPOSITORIES: biostudies-literature

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Experience of Supporting Telemedicine Networks With the Collegium System: First 6 Years.

Wootton Richard R Bonnardot Laurent L

Frontiers in public health 20190821

The Collegium system was first made available in 2012 to support organizations conducting humanitarian or non-commercial telemedicine work in low resource settings. It provides the technical infrastructure necessary to establish a store-and-forward telemedicine service. During the subsequent 6 years a total of 46 networks were established, based on the Collegium infrastructure. The majority of the networks were set up to provide a clinical service (33), with six designed for education and traini ...[more]

PMID: 31497587

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Project description:To describe the process and assess outcomes for the first 2 years of newborn screening for severe combined immunodeficiency (SCID NBS) in New York State (NYS).The NYS algorithm utilizes a first-tier molecular screen for TRECs (T-cell receptor excision circles), the absence of which is indicative of increased risk of immunodeficiency.During the first 2 years, 485,912 infants were screened for SCID. Repeat specimens were requested from 561 premature and 746 non-premature infants with low or borderline TRECs. A total of 531 infants were referred for diagnostic evaluation leading to identification of 10 infants with SCID and 87 with a clinically significant non-SCID abnormality based on flow cytometry or CBC results (positive predictive value 20.3 %). Nine infants were diagnosed with typical SCID and one with leaky SCID. SCID diagnoses included two patients with adenosine deaminase deficiency, three patients with typical and one with leaky IL2RG-related SCID, one patient with IL7R?-related SCID, and three cases of typical SCID, etiology unknown. TRECs were undetectable in eight of the nine babies with typical SCID. Infants with other non-SCID conditions included 27 patients with a syndrome that included T-cell impairment, 18 of which had DiGeorge syndrome. Seventeen infants had T-cell impairment secondary to another clinically significant condition, and 13 were classified as 'other'. Among 30 infants classified as idiopathic T-cell lymphopenia, 11 have since resolved, and the remainder continues to be followed. One infant with undetectable TRECs had normal follow-up studies. Molecular studies revealed the presence of two changes in the infant's DNA.Overall, ten infants with SCID were identified during the first 2 years of screening in NYS, yielding an incidence of approximately 1 in 48,500 live births, which is consistent with the incidence observed by other states screening for SCID. The incidence of any clinically significant laboratory abnormality was approximately 1 in 5,000; both estimates are higher than estimates prior to the onset of newborn screening for SCID. Improvements to the NYS algorithm included the addition of a borderline category that reduced the proportion of infants referred for flow cytometric analysis, without decreasing sensitivity. We identified a large number of infants with abnormal TRECs and subsequent idiopathic T-cell lymphopenia. Long-term follow-up studies are needed to determine the prognosis and optimal treatment for this group of patients, some of whom may present with previously unrecognized, transient lymphopenia of infancy.

Dataset Information

Experience of Supporting Telemedicine Networks With the Collegium System: First 6 Years.

Publications

Experience of Supporting Telemedicine Networks With the Collegium System: First 6 Years.

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