The National Disease Research Interchange and Collaborators on: What Are the Major Hurdles to the Recovery of Human Tissue to Advance Research?

VonDran, Melissa W.; Thomas, Jeffrey A.; Freund, Michelle; Ritsick, Maggie; Orr, Maureen F.; Kaye, Wendy; Knight, Pamela

doi:10.1089/bio.2016.29014.mvd

Cited by 3 publications

(4 citation statements)

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“…One source is the NDRI, a clearinghouse provider of diverse human tissues that matches specimens received from organ procurement organizations with researcher protocols. 22 In fact, 8% of researchers who responded to our survey report that the NDRI is their primary source of human eye tissue. However, the requirement of a minimized death-to-preservation time, specific ophthalmic tissue processing requests, and access to donor medical history can limit the utility of clearinghouse sources like NDRI for vision scientists.…”

Section: Discussionmentioning

confidence: 92%

Accessibility to and Quality of Human Eye Tissue for Research: A Cross-Sectional Survey of ARVO Members

Stamer

Williams

Pflugfelder

et al. 2018

Invest. Ophthalmol. Vis. Sci.

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PURPOSE. To assess experiences of vision scientists concerning the availability, quality, and documentation of human eye tissue for research, and to elicit researcher feedback about the establishment of an online portal that pairs eye bank capabilities with researcher needs. METHODS. An online survey was designed by a working group of vision scientists and eye bank personnel and sent to members of ARVO. RESULTS. A total of 407 responses were received from across ARVO scientific sections and career stages. Most respondents report typically obtaining human eye tissue from their local eye bank (57%). Almost half (43%) find it ''difficult'' or ''very difficult'' to get an adequate quantity of human eye tissue for their research, and 88% report that they would use more human eye tissue if it were more accessible. Regarding tissue quality, 43% of respondents regularly limit the scope of their work due to difficulty obtaining tissue that meets their needs, and almost half (43%) indicate that they question their findings due to tissue quality at least sometimes. Respondents uniformly desire more documentation about ocular tissue than they typically receive. Most (62%) would ''definitely'' or ''very likely'' use a proposed online resource to facilitate connections between eye banks and researchers. CONCLUSIONS. Vision scientists report difficulty in obtaining human eye tissue with the quality and clinical documentation required for their research. An online portal may better help pair researcher needs and eye bank capabilities.

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Section: Discussionmentioning

confidence: 92%

Accessibility to and Quality of Human Eye Tissue for Research: A Cross-Sectional Survey of ARVO Members

Stamer

Williams

Pflugfelder

et al. 2018

Invest. Ophthalmol. Vis. Sci.

View full text Add to dashboard Cite

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“…Access to such donors, with specific criteria, can be problematic, especially in the instance of a rare disease. 14 The system is currently dependent on the relationships between the AUEB and hospital donor coordinators to liaise and identify possible consenting donors who are ineligible for transplantation who may wish to donate for research specific requests. Unfortunately, identification and willingness to donate do not automatically mean the donation is recovered.…”

Section: Nontransplant Grade Tissuementioning

confidence: 99%

“…Development of systems to allow for ineligible transplant donors to donate is important for research, 14 and may be enhanced through the use of consortia tissue management, assuming multi-AUEB/Biobank-ethical conduct was established. Consortia tissue management occurs when banks of two different natures collaborate to share skills and knowledge to recover from consenting donors of a particular characteristic.…”

Section: Nontransplant Grade Tissuementioning

confidence: 99%

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Ocular Tissue for Research in Australia: Strategies for Potential Research Utility of Surplus and Transplant-Ineligible Deceased Donations

Machin

Brown

Sutton

et al. 2020

Trans. Vis. Sci. Tech.

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A 2016 Price Waterhouse Cooper Report, commissioned by the Australian Commonwealth Government's Organ and Tissue Authority, indicated that Australia had been meeting its human ocular tissue for transplant needs. It further suggested that Australia should consider exportation as a management strategy for excess tissue. Although we do not seek to discuss how the Price Waterhouse Cooper Report determined that need was being met, nor the potential value of exportation in this article, we propose that Ocular Tissue for Research (OTR), and particularly identification of donors for research, and timely access to fresh domestic tissue, be considered as an alternate or simultaneous surplus management strategy. A robust OTR system could provide long-term domestic support and investment into research and development of therapies in Australia. Such a system would also provide a meaningful donation option for those otherwise unable to donate for transplant. This article attempts to document, for the first time to our knowledge, the current recovery and distribution processes of deceased OTR in Australia. It maps the process steps, identifies the stakeholders and needs, discusses the limitations and barriers, and proposes key policy and practice reform strategies that may assist in improving access to OTR.

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Rethinking the nonprofit foundation: an emerging niche in the rare disease ecosystem

Rosa

2017

EMBO Mol Med

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In recent years, medical foundations have become increasingly influential, and now play an instrumental and integral role in the research and development of their disease area of interest. While some foundations have directly invested in taking drug candidates to the clinic, others have focused on creating specific tools for accelerating the identification and development of effective treatments. Here, we describe a new model, developed by the Children's Tumor Foundation (CTF), by which foundations may play a role in the rare disease ecosystem. On the one hand, the CTF uses its position to build bridges between academic scientists, biotech and pharmaceutical companies, and patients, to accelerate the development of treatments that really matter most to patients. On the other hand, it acts as a niche investor to fund an integrated platform for critical R&D endeavors—including elements such as a patient registry, biobank, and open data platforms—which smoothen the transition from basic discovery to clinical benefit. Currently, the Children's Tumor Foundation is launching a call to top finance experts to collaborate on building an innovative model that will guarantee long‐term sustainability of this integrated platform (Fig 1).

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The National Disease Research Interchange and Collaborators on: What Are the Major Hurdles to the Recovery of Human Tissue to Advance Research?

Cited by 3 publications

References 0 publications

Accessibility to and Quality of Human Eye Tissue for Research: A Cross-Sectional Survey of ARVO Members

Accessibility to and Quality of Human Eye Tissue for Research: A Cross-Sectional Survey of ARVO Members

Ocular Tissue for Research in Australia: Strategies for Potential Research Utility of Surplus and Transplant-Ineligible Deceased Donations

Rethinking the nonprofit foundation: an emerging niche in the rare disease ecosystem

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