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Science in Donation is a non-profit organization that embraces the values of science, accountability, and transparency as a matter of ethical leadership. We build trust through transparency and disclose our sources of information.

Below is a list of the curated sources we reference throughout the Science in Donation website using the corresponding citations and hyperlinks.

 

The Public Health and Welfare. 42 U.S. Code § 273.

Azar, A. and Verma, S. (November 18, 2020) Medicare and Medicaid Programs; Organ Procurement Organizations Conditions for Coverage: Revisions to the Outcome Measure Requirements for Organ Procurement Organizations; Final rule. Department of Health and Human Services. https://www.cms.gov/files/document/112020-opo-final-rule-cms-3380-f.pdf

Cutrone, C. (June 24, 2014) Why This Startup Wants to Go Out of Business in 5 Years. Inc. Magazine. https://www.inc.com/carolyn-cutrone/35-under-35-organize-greg-segal-and-jenna-arnold.html

Science in Donation. (n.d.) About Us. Science in Donation. https://www.scienceindonation.org/about-us

U.S. Senate, Senate Office Of Public Records. (October 19, 2018) Todd Strategy LLC, Registration.

Hello, World!

U.S. Department of the Treasury, Internal Revenue Service. (January 2016 - January 2018) Form 990. Organ Alliance Inc.

Hello, World!

The Bridgespan Group (n.d.) 2016 Funders and Supporters. The Bridgespan Group. https://www.bridgespan.org/about-us/our-funders

U.S. Department of the Treasury, Internal Revenue Service. (January 2016) Form 990. Organ Alliance Inc.

The Bridgespan Group (January 2019) Reforming Organ Donation in America: Saving 25,000 Lives Per Year and $13 Billion in Taxpayer Funds over Five Years. The Bridgespan Group. https://www.bridgespan.org/bridgespan/Images/articles/reforming-organ-donation-in-america/reforming-organ-donation-in-america-12-2018.pdf

J. Arnold, G. Segal, et al. (July 20, 2017) Changing Metrics of Organ Procurement Organization Performance in Order to Increase Organ Donation Rates in the United States. American Journal of Transplantation. https://onlinelibrary.wiley.com/doi/full/10.1111/ajt.14391

Facher, L. (November, 26, 2019) How a billionaire couple greased the skids for Nancy Pelosi’s drug pricing bill. STAT. https://www.statnews.com/2019/11/26/laura-john-arnold-billionaire-greased-the-skids-for-drug-pricing-bill/​.

Arnold Ventures. (n.d.) Organ Alliance, Inc. Arnold Ventures. https://www.arnoldventures.org/grants/organ-alliance-inc-1

Park, T., Sivak, B., Fox, S., Greenstein, B., Simcox, E. (October 2020) The Costly Effects of an Outdated Organ Donation System. Arnold Ventures and Schmidt Futures OPO Best Practices. https://bloomworks.digital/organdonationreform/OPO-Best-Practices

Tullius, S. and Rabb, H. (May 17, 2018) Improving the Supply and Quality of Deceased-Donor Organs for Transplantation. The New England Journal of Medicine. https://www.nejm.org/action/showPdf?downloadfile=showPdf&doi=10.1056/NEJMra1507080&loaded=true

Segal, G. (December 2, 2019) Organ Donation in Dire Need of Reforms. Albuquerque Journal. https://www.abqjournal.com/1522747/organ-donation-in-dire-need-of-reforms.html

The Washington Post. (August 27, 2020) The guardians of public health are allowing Trump to undermine and humiliate them. The Washington Post. https://www.washingtonpost.com/opinions/the-guardians-of-public-health-are-allowing-trump-to-undermine-and-humiliate-them/2020/08/27/fd03fc56-e881-11ea-970a-64c73a1c2392_story.html

The power to record births and deaths is expressly reserved to the States by the Tenth Amendment. This information is maintained BY 57 Vital Records Jurisdictions, including all 50 States, .5 Territories, the District of Columbia, and New York City. Largely, state laws determine what information may be shared and for what purposes.

National Center for Health Statistics. National Death Index user’s guide. Hyattsville, MD. 2013. https://www.cdc.gov/nchs/data/ndi/NDI_Users_Guide.pdf

See also:(October 26, 1999, CONGRESSIONAL RECORD—HOUSE H10813:

SEC. 5. LIMITATIONS ON USE AND DISCLOSURE OF DATA AND INFORMATION BY STATISTICAL DATA CENTERS.

(a) USE OF STATISTICAL DATA OR INFORMATION. —

The Center shall use data or information acquired by a Statistical Data Center for exclusively statistical purposes and only for statistical purposes.

(b) DISCLOSURE OF STATISTICAL DATA OR INFORMATION. —

Data or information acquired for exclusively statistical purposes shall not be disclosed in identifiable form, for any purpose other than a statistical purpose, without the informed consent of the respondent.

(c) RULE FOR USE OF DATA OR INFORMATION

FOR NONSTATISTICAL PURPOSES.—A Statistical Data Center shall clearly distinguish any data or information collected for nonstatistical purposes (as authorized by law) by the Statistical Data Center by a rule that provides that the respondent supplying the data or information is fully informed, before the data or information is collected, that the data or information will be used for nonstatistical purposes; 

https://www.govinfo.gov/content/pkg/CREC-1999-10-26/pdf/CREC-1999-10-26-pt1-PgH10812.pdf

The Validity of Race and Hispanic-origin Reporting on Death Certificates in the United States: An Update by Elizabeth Arias, Ph.D., and Melonie Heron, Ph.D., National Center for Health Statistics; and Jahn K. Hakes, Ph.D., U.S. Census Bureau, 2016; https://www.cdc.gov/nchs/data/series/sr_02/sr02_172.pdf

 “Most notably, some type of error (major or minor) was present in 46 of 50 (92%) of cases.  …A small number (7 of 50, 14%) also included what we classified as "medical."

Using National Inpatient Death Rates as a Benchmark to Identify Hospitals with Inaccurate Cause of Death Reporting — Missouri, 2009–2012, 2017 Jennifer Lloyd, MSPH1; Ehsan Jahanpour, MS1; Brian Angell1; Craig Ward, MSW1; Andy Hunter, MA1; Cherri Baysinger, MS1; George Turabelidze, MD, Ph.D.; https://www.cdc.gov/mmwr/volumes/66/wr/pdfs/mm6601a5.pdf

“Overall, the cause of death reported on 24%–65% of death certificates submitted by the reviewed hospitals did not agree with the conclusions reached by the chart reviewers.”