{"id":{"repo_id":"mit","oai_identifier":"oai:dspace.mit.edu:1721.1/84413"},"canonical_url":"https://search.dev.ndltd.org/etd/mit/oai:dspace.mit.edu:1721.1/84413","repository":{"repo_id":"mit","name":"MIT","base_url":"https://dspace.mit.edu/oai/request"},"display":{"title":"The contribution of disease focused nonprofits to biomedical research and development","abstract":"Patient-centered, disease-focused nonprofits are playing an increasingly prominent role in accelerating the development of new diagnostics, drugs, and therapies. They are engaging in a variety of complex venture philanthropic activities as they seek to bridge the \"valley of death\" gap between basic and clinical research. Examples of such activities include developing preclinical research tools, supporting clinical trials infrastructure, and investing in private biotechnology companies. In this thesis, 1: 1) quantify the financial contribution of US-based nonprofits to biomedical research and development (R&D) and the allocation to therapeutic areas; and 2) propose a framework for understanding the core functions of biomedical venture philanthropies. I find that US-based nonprofits contributed $3.7 billion to biomedical R&D in 2011, and that within certain disease areas nonprofit spending is comparable to or exceeds spending by the National Institutes of Health (NIH). I catalogue nonprofit activities and place them in a framework of five core functions: bridging gaps, enabling research, directing pipelines, informing stakeholders, and shaping markets. I present several case studies via this framework, discuss opportunities, and point out challenges such as a lack of conflict of interest standards. Methods included recording and analyzing publically available financial data from over 400 biomedical nonprofits, and conducting a series of in depth interviews with nonprofit executives and other related professionals.","abstract_html":"Patient-centered, disease-focused nonprofits are playing an increasingly prominent role in accelerating the development of new diagnostics, drugs, and therapies. They are engaging in a variety of complex venture philanthropic activities as they seek to bridge the "valley of death" gap between basic and clinical research. Examples of such activities include developing preclinical research tools, supporting clinical trials infrastructure, and investing in private biotechnology companies. In this thesis, 1: 1) quantify the financial contribution of US-based nonprofits to biomedical research and development (R&D) and the allocation to therapeutic areas; and 2) propose a framework for understanding the core functions of biomedical venture philanthropies. I find that US-based nonprofits contributed $3.7 billion to biomedical R&D in 2011, and that within certain disease areas nonprofit spending is comparable to or exceeds spending by the National Institutes of Health (NIH). I catalogue nonprofit activities and place them in a framework of five core functions: bridging gaps, enabling research, directing pipelines, informing stakeholders, and shaping markets. I present several case studies via this framework, discuss opportunities, and point out challenges such as a lack of conflict of interest standards. Methods included recording and analyzing publically available financial data from over 400 biomedical nonprofits, and conducting a series of in depth interviews with nonprofit executives and other related professionals.","abstract_has_math":false,"creators":["Polis Schutz, Jordanna"],"institution":"Massachusetts Institute of Technology","degree_name":null,"degree_level":null,"degree_discipline":null,"degree_department":"Harvard--MIT Program in Health Sciences and Technology.","school":null,"contributors":[],"advisors":["Ernst Berndt."],"committee_chairs":[],"committee_members":[],"year":2013,"date_issued":"2013","date_published":"2013","updated_at":"2026-07-22T22:21:52Z","subjects":["Harvard--MIT Program in Health Sciences and Technology."],"languages":["eng"],"rights":["M.I.T. theses are protected by copyright. They may be viewed from this source for any purpose, but reproduction or distribution in any format is prohibited without written permission. See provided URL for inquiries about permission."],"rights_urls":["http://dspace.mit.edu/handle/1721.1/7582"],"identifier_entries":[]},"links":{"outbound_url":"http://hdl.handle.net/1721.1/84413","outbound_label":"Handle","outbound_source":"dc:identifier.uri"},"metadata_groups":[{"id":"people","label":"People","entries":[{"key":"dc:contributor.advisor","label":"Advisor","values":["Ernst Berndt."]},{"key":"dc:contributor.department","label":"Department","values":["Harvard--MIT Program in Health Sciences and Technology."]},{"key":"dc:contributor.other","label":"Dc Contributor Other","values":["Harvard--MIT Program in Health Sciences and Technology."]},{"key":"dc:creator","label":"Author","values":["Polis Schutz, Jordanna"]}]},{"id":"academic_context","label":"Academic Context","entries":[{"key":"dc:date.accessioned","label":"Dc Date Accessioned","values":["2014-01-23T18:42:35Z"]},{"key":"dc:date.available","label":"Dc Date Available","values":["2014-01-23T18:42:35Z"]},{"key":"dc:date.issued","label":"Date","values":["2013"]},{"key":"dc:publisher","label":"Institution","values":["Massachusetts Institute of Technology"]},{"key":"dc:type","label":"Dc Type","values":["Thesis"]}]},{"id":"subjects_keywords","label":"Subjects and Keywords","entries":[{"key":"dc:subject","label":"Dc Subject","values":["Harvard--MIT Program in Health Sciences and Technology."]}]},{"id":"language_rights","label":"Language and Rights","entries":[{"key":"dc:language.iso","label":"Language (ISO)","values":["eng"]},{"key":"dc:rights","label":"Dc Rights","values":["M.I.T. theses are protected by copyright. They may be viewed from this source for any purpose, but reproduction or distribution in any format is prohibited without written permission. See provided URL for inquiries about permission."]},{"key":"dc:rights.uri","label":"Rights URI","values":["http://dspace.mit.edu/handle/1721.1/7582"]}]},{"id":"identifiers","label":"Identifiers","entries":[{"key":"dc:identifier.uri","label":"Identifier URI","values":["http://hdl.handle.net/1721.1/84413"]}]},{"id":"additional","label":"Additional Metadata","entries":[{"key":"dc:description","label":"Description","values":["Thesis (S.M.)--Harvard-MIT Program in Health Sciences and Technology, 2013.","Cataloged from PDF version of thesis.","Includes bibliographical references (pages 88-92)."]},{"key":"dc:description.abstract","label":"Abstract","values":["Patient-centered, disease-focused nonprofits are playing an increasingly prominent role in accelerating the development of new diagnostics, drugs, and therapies. They are engaging in a variety of complex venture philanthropic activities as they seek to bridge the \"valley of death\" gap between basic and clinical research. Examples of such activities include developing preclinical research tools, supporting clinical trials infrastructure, and investing in private biotechnology companies. In this thesis, 1: 1) quantify the financial contribution of US-based nonprofits to biomedical research and development (R&D) and the allocation to therapeutic areas; and 2) propose a framework for understanding the core functions of biomedical venture philanthropies. I find that US-based nonprofits contributed $3.7 billion to biomedical R&D in 2011, and that within certain disease areas nonprofit spending is comparable to or exceeds spending by the National Institutes of Health (NIH). I catalogue nonprofit activities and place them in a framework of five core functions: bridging gaps, enabling research, directing pipelines, informing stakeholders, and shaping markets. I present several case studies via this framework, discuss opportunities, and point out challenges such as a lack of conflict of interest standards. Methods included recording and analyzing publically available financial data from over 400 biomedical nonprofits, and conducting a series of in depth interviews with nonprofit executives and other related professionals."]},{"key":"dc:description.degree","label":"Dc Description Degree","values":["S.M."]},{"key":"dc:title","label":"Title","values":["The contribution of disease focused nonprofits to biomedical research and development"]}]}],"canonical_facts":{"dc:contributor.advisor":["Ernst Berndt."],"dc:contributor.department":["Harvard--MIT Program in Health Sciences and Technology."],"dc:contributor.other":["Harvard--MIT Program in Health Sciences and Technology."],"dc:creator":["Polis Schutz, Jordanna"],"dc:date.accessioned":["2014-01-23T18:42:35Z"],"dc:date.available":["2014-01-23T18:42:35Z"],"dc:date.issued":["2013"],"dc:description":["Thesis (S.M.)--Harvard-MIT Program in Health Sciences and Technology, 2013.","Cataloged from PDF version of thesis.","Includes bibliographical references (pages 88-92)."],"dc:description.abstract":["Patient-centered, disease-focused nonprofits are playing an increasingly prominent role in accelerating the development of new diagnostics, drugs, and therapies. They are engaging in a variety of complex venture philanthropic activities as they seek to bridge the \"valley of death\" gap between basic and clinical research. Examples of such activities include developing preclinical research tools, supporting clinical trials infrastructure, and investing in private biotechnology companies. In this thesis, 1: 1) quantify the financial contribution of US-based nonprofits to biomedical research and development (R&D) and the allocation to therapeutic areas; and 2) propose a framework for understanding the core functions of biomedical venture philanthropies. I find that US-based nonprofits contributed $3.7 billion to biomedical R&D in 2011, and that within certain disease areas nonprofit spending is comparable to or exceeds spending by the National Institutes of Health (NIH). I catalogue nonprofit activities and place them in a framework of five core functions: bridging gaps, enabling research, directing pipelines, informing stakeholders, and shaping markets. I present several case studies via this framework, discuss opportunities, and point out challenges such as a lack of conflict of interest standards. Methods included recording and analyzing publically available financial data from over 400 biomedical nonprofits, and conducting a series of in depth interviews with nonprofit executives and other related professionals."],"dc:description.degree":["S.M."],"dc:identifier.uri":["http://hdl.handle.net/1721.1/84413"],"dc:language.iso":["eng"],"dc:publisher":["Massachusetts Institute of Technology"],"dc:rights":["M.I.T. theses are protected by copyright. They may be viewed from this source for any purpose, but reproduction or distribution in any format is prohibited without written permission. See provided URL for inquiries about permission."],"dc:rights.uri":["http://dspace.mit.edu/handle/1721.1/7582"],"dc:subject":["Harvard--MIT Program in Health Sciences and Technology."],"dc:title":["The contribution of disease focused nonprofits to biomedical research and development"],"dc:type":["Thesis"]},"updated_at":"2026-07-22T22:21:52Z"}