Civic Intelligence

Huntington Study Group Ltd.

990 • Fiscal year 2018 • EIN 45-5557987

Jan 01, 2018 to Dec 31, 2018 • Filed on Nov 15, 2019

Organization ProfileWWW.HUNTINGTONSTUDYGROUP.ORG

View Organization Page

95 Allens Creek Bldg 1 No 132Rochester, NY 14618

(585) 242-0276

Siviq Scores

Precomputed percentiles for this filing year versus similar nonprofits in the same peer cohort.

Liabilities / Assets

73rd percentile

0.44x

Higher debt load relative to assets than 73% of similar nonprofits.

2018 filings • 501(c)3 • $5M-$10M nonprofits • Source year 2018

Liabilities / Revenue

61st percentile

0.26x

Higher debt load relative to revenue than 61% of similar nonprofits.

2018 filings • 501(c)3 • $5M-$10M nonprofits • Source year 2018

Net Margin

47th percentile

2.1%

Higher net margin than 47% of similar nonprofits.

2018 filings • 501(c)3 • $5M-$10M nonprofits • Source year 2018

Top Officer Pay

63rd percentile

$154,731

Higher top officer pay than 63% of similar nonprofits.

Top officer pay equals 1.6% of source-year revenue.

2018 filings • 501(c)3 • $5M-$10M nonprofits • Source year 2018

Asset Growth

68th percentile

7.2%

Faster asset growth than 68% of similar nonprofits.

2018 filings • 501(c)3 • $5M-$10M nonprofits • Annualized from 2017 to 2018

Revenue Growth

76th percentile

19%

Faster revenue growth than 76% of similar nonprofits.

2018 filings • 501(c)3 • $5M-$10M nonprofits • Annualized from 2017 to 2018

Balance Sheet
Liabilities / Assets73rd percentile

Assets

Up

$5,832,539

Up $394,077 (+7.2%) from 2017

Net Assets

Up

$3,269,540

Up $41,991 (+1.3%) from 2017

Liabilities

Up

$2,562,999

Up $352,086 (+16%) from 2017

Revenue And Expenses
Liabilities / Revenue61st percentileNet Margin47th percentile

Revenue

Up

$9,752,778

Up $1,569,053 (+19%) from 2017

Expenses

Up

$9,546,664

Up $1,370,281 (+17%) from 2017

Net Income

Up

$206,114

Up $198,772 (+2707%) from 2017

Historical Trend

Balance Sheet Trend

Asset Growth68th percentile

The highlighted filing sits inside the broader history for assets, liabilities, and net assets.

$15M$10M$5.0M$0-$5.0MAssets 2012: $122,118Liabilities 2012: $139,106Net Assets 2012: -$16,9882012Assets 2013: $1,388,134Liabilities 2013: $411,332Net Assets 2013: $976,8022013Assets 2014: $2,418,412Liabilities 2014: $945,756Net Assets 2014: $1,472,6562014Assets 2015: $4,189,297Liabilities 2015: $1,573,697Net Assets 2015: $2,615,6002015Assets 2016: $5,486,806Liabilities 2016: $2,416,198Net Assets 2016: $3,070,6082016Assets 2017: $5,438,462Liabilities 2017: $2,210,913Net Assets 2017: $3,227,5492017Assets 2018: $5,832,539Liabilities 2018: $2,562,999Net Assets 2018: $3,269,5402018Assets 2019: $7,722,690Liabilities 2019: $3,859,881Net Assets 2019: $3,862,8092019Assets 2020: $7,657,910Liabilities 2020: $2,461,013Net Assets 2020: $5,196,8972020Assets 2021: $10,251,900Liabilities 2021: $3,736,123Net Assets 2021: $6,515,7772021Assets 2022: $8,704,616Liabilities 2022: $2,783,750Net Assets 2022: $5,920,8662022Assets 2023: $8,173,182Liabilities 2023: $1,899,350Net Assets 2023: $6,273,8322023Assets 2024: $8,061,578Liabilities 2024: $1,232,734Net Assets 2024: $6,828,8442024

Highlighted filing

2018

Assets$5,832,539
Liabilities$2,562,999
Net Assets$3,269,540
Open 2018 Filing

Operations Trend

Revenue Growth76th percentile

Revenue, expenses, and net income across loaded years, with this filing highlighted.

$15M$10M$5.0M$0-$5.0MRevenue 2012: $56,045Expenses 2012: $73,033Net Income 2012: -$16,9882012Revenue 2013: $3,735,270Expenses 2013: $2,741,480Net Income 2013: $993,7902013Revenue 2014: $6,987,372Expenses 2014: $6,491,518Net Income 2014: $495,8542014Revenue 2015: $7,564,038Expenses 2015: $6,375,601Net Income 2015: $1,188,4372015Revenue 2016: $9,461,750Expenses 2016: $9,087,801Net Income 2016: $373,9492016Revenue 2017: $8,183,725Expenses 2017: $8,176,383Net Income 2017: $7,3422017Revenue 2018: $9,752,778Expenses 2018: $9,546,664Net Income 2018: $206,1142018Revenue 2019: $13,110,561Expenses 2019: $12,788,592Net Income 2019: $321,9692019Revenue 2020: $11,167,411Expenses 2020: $10,180,312Net Income 2020: $987,0992020Revenue 2021: $9,967,496Expenses 2021: $9,091,521Net Income 2021: $875,9752021Revenue 2022: $6,746,002Expenses 2022: $6,756,731Net Income 2022: -$10,7292022Revenue 2023: $6,359,880Expenses 2023: $6,564,085Net Income 2023: -$204,2052023Revenue 2024: $5,041,772Expenses 2024: $4,916,902Net Income 2024: $124,8702024

Highlighted filing

2018

Revenue$9,752,778
Expenses$9,546,664
Net Income$206,114
Open 2018 Filing
Jump To
Filing Snapshot
Filing Period
Jan 1, 2018 to Dec 31, 2018
Signed
Nov 15, 2019
Return Version
2018v3.1
Gross Receipts
$9,752,778
Mission and Program Overview

Mission

The huntington study group (hsg) is dedicated to the mission: to seek treatments that make a difference to those affected by huntington disease. Description continued on schedule o.specifically, the hsg focuses on the conception, conduct, analyses, scientific reporting, and communication of clinical research, including treatment and observational trials, aimed at relieving the burdens and slowing the progression of hd. The hsg 1) identifies and prioritizes initiatives that can have an impact on patient care; 2) advances knowledge about the cause, disease progression and treatment of hd and related disorders; and 3) collaborates with government, foundations, industry, and the hd community to effectively plan, execute and disseminate research and new knowledge related to hd.

See schedule o for organization's mission and most significant activities.the organization aims to advance knowledge about the cause(s), disease progression and treatment of huntington disease and related disorders.

Balance Sheet Detail
LineBeginningEndChange
Assets
Accounts Receivable$1,424,965$2,650,919▲ $1,225,954
Investments in Publicly Traded Securities$2,622,033$2,518,677▼ $103,356
Cash and Non-Interest-Bearing Accounts$1,370,714$433,055▼ $937,659
Savings and Temporary Cash Investments-$200,286-
Prepaid Expenses and Deferred Charges$11,140$20,515▲ $9,375
Land, Buildings, and Equipment, Net$9,610$9,087▼ $523
Total Assets$5,438,462$5,832,539▲ $394,077
Liabilities
Accounts Payable and Accrued Expenses$2,148,234$2,514,571▲ $366,337
Deferred Revenue$62,679$48,428▼ $14,251
Total Liabilities$2,210,913$2,562,999▲ $352,086
Net Assets / Fund Balance
Unrestricted Net Assets$3,162,771$3,269,540▲ $106,769
Temporarily Rstr Net Assets$64,778$0▼ $64,778
Total Net Assets Fund Balance$3,227,549$3,269,540▲ $41,991
Total Liabilities and Net Assets / Fund Balance$5,438,462$5,832,539▲ $394,077

Asset Categories

AssetBook ValueDepreciationBasis
Equipment$9,087$19,413$28,500
Compensation and Service Providers
Top Officer Pay63rd percentile

Employees

NameTitleFull / Part TimeBaseOtherTotal
Shari Kinel JdExec. Director/secretaryFT$136,243$18,488$154,731
Anne VandusenDirector of OperationsFT$93,499$3,259$96,758
Stevan RamirezFormer Director of FinanceFT$46,794$7,187$53,981
Andrew Feigin MdChairPT$33,000-$33,000
Elise Kayson Ms Rn AnpCo-chairPT$25,000-$25,000
Joni SteinmanBoard MemberPT$10,000-$10,000
Julie Stout Bs Ma PhdTreasurerPT$10,000-$10,000
Blair Leavitt MdFormer Chair, Term Exp. 4/30/18PT$6,667-$6,667
Ray Dorsey MdFormer Chair, Term Exp. 4/30/18PT$6,667-$6,667

Board Members and Trustees

NameTitle
Eric Siemers MdBoard Member
Peter Schmidt PhdBoard Member
William HohBoard Member

Highest Paid Contractors

ContractorServicesLocationCompensation
University Of Rochester ChetTrial Management265 CRITTENDEN BLVD, Rochester, NY 14642$2,032,590
Hotel ZazaConference Services5701 MAIN STREET, Houston, TX 77005$378,762
New York University School Of MedicinePatient Fees550 1ST AVENUE, New York, NY 10016$314,448
University Of Colorado Anschutz MedicalPatient Fees13001 E 17TH PLACE B119, Aurora, CO 80045$304,697
University Of California San Diego RegenPatient Fees9500 GILMAN DR, La Jolla, CA 92093$285,771
Revenue and Support

Revenue Composition

Contributions and Grants
$491,525
Program Service Revenue
$9,148,436
Investment Income
$73,566
Other Revenue
$39,251
All Other Contributions
$491,525
Change in Net Assets
$206,114

Audited Revenue Reconciliation

Revenue per Audited Statements
$9,752,778
Revenue Not Reported on Financial Statements
$0
Revenue Not Reported on Form 990
$-164,123
Total Revenue per Audited Statements
$9,588,655
Total Revenue per Form 990
$9,752,778
Expenses and Functional Allocation

Major Expense Lines

Line ItemAmount
Other Expenses$8,869,114
Salaries, Compensation, and Employee Benefits$597,758
Grants and Similar Amounts Paid$79,792
Professional Fundraising Fees$0
Total Fundraising Expense$0

Functional Expense Allocation

Line ItemProgramManagementFundraisingTotal
Conferences and Meetings$418,398$51,918-$470,316
Current Officers, Directors, Trustees, and Key Employees-$396,804-$396,804
Travel$263,276$4,379-$267,655
Other Salaries and Wages-$147,474-$147,474
Grants to Domestic Orgs$79,792--$79,792
Advertising$44,763$25,372-$70,135
Fees for Services Other-$50,427-$50,427
Payroll Taxes-$35,301-$35,301
Occupancy-$22,644-$22,644
Office Expenses$9,441$12,428-$21,869
Information Technology-$18,280-$18,280
Other Employee Benefits-$17,534-$17,534
Insurance-$16,952-$16,952
Fees for Services Legal-$14,027-$14,027
Fees for Services Accounting-$7,375-$7,375
Other Expenses$8,832$4,452-$4,452
Depreciation Depletion-$3,681-$3,681
Pension Plan Contributions-$645-$645
Total Functional Expenses$8,686,440$860,224$0$9,546,664

Audited Expense Reconciliation

Line ItemAmount
Expenses per Audited Statements$9,546,664
Total Expenses per Audited Statements$9,546,664
Total Expenses per Form 990$9,546,664
Expenses Not Reported on Financial Statements$0
Expenses Not Reported on Form 990$0
International Activity

Grant and Assistance Recipients

RecipientLocationCategoryPurposeAmount
Regents of the University of Carolina IrvineIrvine, CA-Seed Fund Grant$51,792
HUNTINGTON'S DISEASE YOUTH ORGANIZATIONBoca Raton, FL501(c)(3)Seed Fund Grant$10,000
Dr Daniel Claassen Vanderbilt UniversityNashville, TN501(c)(3)Seed Fund Grant$6,500
University of Rochester Department of NeurologyRochester, NY501(c)(3)Seed Fund Grant$6,500
Regents of the University of MichiganAnn Arbor, MI-Seed Fund Grant$5,000
Fundraising, Events, and Gaming
Fundraising activities
No
Gaming activities
No
Professional fundraiser used
No

Fundraising and Gaming Totals

Line ItemAmount
Professional Fundraising Fees$0
Political and Lobbying Activity
Political campaign activity
No
Lobbying activity
No
Subject to proxy tax
No
Governance and Compliance

Governance Checklist

Compiled or reviewed by an accountant
No
Annual disclosure for covered persons
Yes
Audit committee
Yes
Backup withholding compliance
Yes
Business relationship with family members
No
Business relationship with organization members
No
Material changes to governing documents
No
Compensation from other sources disclosed
No
CEO compensation reviewed
Yes
Other officer compensation reviewed
Yes
Conflict-of-interest policy
Yes
Audited financial statements prepared
No
Key decisions subject to board approval
No
Management duties delegated
No

Governance Explanations

Form 990, Part VI, Section B, Line 11B

“The form 990 is reviewed internally by the executive director and director of finance and then shared with the board before filing.”

Form 990, Part VI, Section B, Line 12C

“Each director, officer, committee member or employee shall sign annually a statement that confirms that they have received the conflict of interest policy, understands the policy, has agreed to comply with the policy and understands that the organization is a tax exempt entity and that in order to maintain its exemption it must engage primarily in activities that accomplish one or more of its tax exempt purposes. Periodic reviews are conducted to ensure compliance with this policy.”

Form 990, Part VI, Section B, Line 15

“The amount of compensation was based on a decision to offer a stipend to board members for the significant amount of time and commitment spent by the board members on an annual basis. The executive director has determined that the stipends are deemed to be reasonable in relation to the amount of time spent by the board of directors.”

Form 990, Part VI, Section C, Line 19

“All documents are available upon request”

Filing and Contact Details

Filer

Filer Name
Huntington Study Group Ltd
EIN
45-5557987
Phone
5852420276
Address
95 ALLENS CREEK BLDG 1 NO 132, ROCHESTER, NY 14618

Signing Officer

Name
Shari Kinel
Title
Executive Director
Phone
5852420276
Signed
2019-11-15
Discuss with paid preparer
Yes

Organization Details

Principal Officer
Shari Kinel
Formed
2012
Legal Domicile
Ny
Voting Board Members
7
Independent Board Members
6
Employees
4
Volunteers
55

Preparer

Firm
Efpr Group Cpas Pllc
Address
280 KENNETH DRIVE, ROCHESTER, NY 14623
Preparer
Christopher Johnston
Phone
5854278900
Supplemental Narrative

Additional Explanations

FORM 990, PART XII, LINE 2C:

“No change from the prior year.”

Financial Statement Notes

PART X, LINE 2:

“The organization is exempt from federal income tax under section 501(c)(3) of the internal revenue code. However, income from certain activities not directly related to the organization's tax-exempt purpose is subject to taxation as unrelated business income. In accordance with asc 740-10-50, the organization recognizes tax benefits from uncertain tax positions only if it is more likely than not that the tax position will be sustained on examination by the taxing authorities. Management believes that the organization is currently operating in compliance with the applicable requirements of the internal revenue code. Therefore, no liability for unrecognized tax benefits has been included on the organization's financial statements. The exempt organization's informational returns are subject to audit by various taxing authorities.”

Raw XML AppendixShowing 400 of 604 raw XML fields

This appendix keeps the raw XML leaves available for debugging and edge-case review. The human report above is the primary experience.

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IRS990/Desc0THE HSG IS A NETWORK OF CLINICIANS, RESEARCH INVESTIGATORS, SCIENTISTS AND HUNTINGTON DISEASE (HD) EXPERTS, LARGELY FROM ACADEMIC/RESEARCH INSTITUTIONS WORLDWIDE WORKING TOGETHER WITH A VARIETY OF SPONSORS (GOVERNMENT, INDUSTRY, FOUNDATION) TO DEVELOP TREATMENTS THAT MAKE A DIFFERENCE FOR HD PATIENTS AND FAMILIES. WE PARTNER WITH HD CARE AND ADVOCACY GROUPS IN ORDER TO FULFILL OUR MISSION MOST EFFECTIVELY.DESCRIPTION CONTINUED ON SCHEDULE O.THE HSG HAS CARRIED OUT COOPERATIVE THERAPEUTIC RESEARCH SINCE 1993, BEGINNING WITH THE DEVELOPMENT OF THE UNIFIED HUNTINGTON'S DISEASE RATING SCALE (UHDRS) AND LONGITUDINAL DATABASE. THE HSG, THROUGH A CLINICAL TRIAL, BROUGHT THE FIRST AND TO DATE ONLY FDA-APPROVED HD TREATMENT (TETRABENAZINE) TO MARKET. WE CONTINUE TO SERVE OUR CONSTITUENTS THROUGH CLINICAL RESEARCH STUDIES. THE HSG HAS PARTNERED WITH PHARMACEUTICAL COMPANIES, PRIVATE FOUNDATIONS, THE NATIONAL INSTITUTES OF HEALTH (NIH), AND THE FDA ORPHAN DRUG PRODUCTS DIVISIONS IN DEVELOPING AND CONDUCTING TRIALS AND OBSERVATIONAL STUDIES.THE HSG IS COMMITTED TO 1) ADVANCE KNOWLEDGE ABOUT THE CAUSE, DISEASE PROGRESSION AND TREATMENT OF HD AND RELATED DISORDERS; 2) DEVELOPMENT, ACCESS TO, AND MAINTENANCE OF STUDY DATABASES; 3) FULL DISCLOSURE OF RESEARCH RESULTS IN SCIENTIFIC JOURNALS AFTER INDEPENDENT EXPERT REVIEW; 4) PROTECTION AGAINST CONFLICT OF INTEREST; 5) UNIFORM CONTRACTING AND SUB-CONTRACTING ACROSS ALL RESEARCH SITES; AND 6) DEMOCRATIC GOVERNANCE OF ITS ORGANIZATIONS AND ACTIVITIES.
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IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt90
IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt107187
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IRS990/Form990PartVIISectionAGrp/PersonNm7WILLIAM HOH
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IRS990/Form990PartVIISectionAGrp/PersonNm10STEVAN RAMIREZ
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IRS990/Form990PartVIISectionAGrp/TitleTxt1CO-CHAIR
IRS990/Form990PartVIISectionAGrp/TitleTxt2TREASURER
IRS990/Form990PartVIISectionAGrp/TitleTxt3EXEC. DIRECTOR/SECRETARY
IRS990/Form990PartVIISectionAGrp/TitleTxt4BOARD MEMBER
IRS990/Form990PartVIISectionAGrp/TitleTxt5BOARD MEMBER
IRS990/Form990PartVIISectionAGrp/TitleTxt6BOARD MEMBER
IRS990/Form990PartVIISectionAGrp/TitleTxt7BOARD MEMBER
IRS990/Form990PartVIISectionAGrp/TitleTxt8FORMER CHAIR, TERM EXP. 4/30/18
IRS990/Form990PartVIISectionAGrp/TitleTxt9FORMER CHAIR, TERM EXP. 4/30/18
IRS990/Form990PartVIISectionAGrp/TitleTxt10FORMER DIRECTOR OF FINANCE
IRS990/Form990PartVIISectionAGrp/TitleTxt11DIRECTOR OF OPERATIONS
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IRS990/MissionDesc0THE HUNTINGTON STUDY GROUP (HSG) IS DEDICATED TO THE MISSION: TO SEEK TREATMENTS THAT MAKE A DIFFERENCE TO THOSE AFFECTED BY HUNTINGTON DISEASE. DESCRIPTION CONTINUED ON SCHEDULE O.SPECIFICALLY, THE HSG FOCUSES ON THE CONCEPTION, CONDUCT, ANALYSES, SCIENTIFIC REPORTING, AND COMMUNICATION OF CLINICAL RESEARCH, INCLUDING TREATMENT AND OBSERVATIONAL TRIALS, AIMED AT RELIEVING THE BURDENS AND SLOWING THE PROGRESSION OF HD. THE HSG 1) IDENTIFIES AND PRIORITIZES INITIATIVES THAT CAN HAVE AN IMPACT ON PATIENT CARE; 2) ADVANCES KNOWLEDGE ABOUT THE CAUSE, DISEASE PROGRESSION AND TREATMENT OF HD AND RELATED DISORDERS; AND 3) COLLABORATES WITH GOVERNMENT, FOUNDATIONS, INDUSTRY, AND THE HD COMMUNITY TO EFFECTIVELY PLAN, EXECUTE AND DISSEMINATE RESEARCH AND NEW KNOWLEDGE RELATED TO HD.
IRS990/MoreThan5000KToIndividualsInd00
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IRS990/OtherExpensesGrp/Desc1LICENSES AND FEES
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IRS990/PayPremiumsPrsnlBnftCntrctInd00
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IRS990/ProgramServiceRevenueGrp/Desc0PROGRAM SERVICE REVENU
IRS990/ProgramServiceRevenueGrp/Desc1LICENSE FEES
IRS990/ProgramServiceRevenueGrp/Desc2ANNUAL MEETING REVENUE
IRS990/ProgramServiceRevenueGrp/RelatedOrExemptFuncIncomeAmt08715679
IRS990/ProgramServiceRevenueGrp/RelatedOrExemptFuncIncomeAmt1271075
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IRS990/ProgramServiceRevenueGrp/TotalRevenueColumnAmt2161682
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IRS990/PYOtherExpensesAmt07570504
IRS990/PYOtherRevenueAmt040201
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IRS990/PYRevenuesLessExpensesAmt07342
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IRS990/PYTotalExpensesAmt08176383
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IRS990/PYTotalRevenueAmt08183725
IRS990/QuidProQuoContributionsInd00
IRS990/RcvFndsToPayPrsnlBnftCntrctInd00
IRS990/ReconcilationRevenueExpnssAmt0206114
IRS990/RegularMonitoringEnfrcInd01
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IRS990/RelatedOrganizationCtrlEntInd00
IRS990/ReportInvestmentsOtherSecInd00
IRS990/ReportLandBuildingEquipmentInd01
IRS990/ReportOtherAssetsInd00
IRS990/ReportOtherLiabilitiesInd00
IRS990/ReportProgramRelatedInvstInd00
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IRS990ScheduleA/GiftsGrantsContrisRcvd509Grp/CurrentTaxYearMinus2YearsAmt0432500
IRS990ScheduleA/GiftsGrantsContrisRcvd509Grp/CurrentTaxYearMinus3YearsAmt0118359
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Document Assets

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Filings

Displayed year

2018 • Form 990Detailed filing. Detailed filing data is available for this year.

Open filing
Assets
$5,832,539
Liabilities
$2,562,999
Net assets
$3,269,540
Revenue
$9,752,778
Expenses
$9,546,664
Net income
$206,114
Balance SheetOperations
YearAssetsLiabilitiesNet AssetsRevenueExpensesNet Income
2024Facts available. Structured filing facts are available, but richer extracted sections are limited.$8.06$1.23$6.83$5.04$4.92$0.12
2023XML pending. An XML filing is linked for this year, but detailed extraction is still pending.$8.17$1.90$6.27$6.36$6.56$0.20
2022Facts available. Structured filing facts are available, but richer extracted sections are limited.$8.70$2.78$5.92$6.75$6.76$0.01
2021XML pending. An XML filing is linked for this year, but detailed extraction is still pending.$10.3$3.74$6.52$9.97$9.09$0.88
2020XML pending. An XML filing is linked for this year, but detailed extraction is still pending.$7.66$2.46$5.20$11.2$10.2$0.99
2019Facts available. Structured filing facts are available, but richer extracted sections are limited.$7.72$3.86$3.86$13.1$12.8$0.32
2018Detailed filing. Detailed filing data is available for this year.$5.83$2.56$3.27$9.75$9.55$0.21
2017XML pending. An XML filing is linked for this year, but detailed extraction is still pending.$5.44$2.21$3.23$8.18$8.18$0.01
2016Facts available. Structured filing facts are available, but richer extracted sections are limited.$5.49$2.42$3.07$9.46$9.09$0.37
2015Detailed filing. Detailed filing data is available for this year.$4.19$1.57$2.62$7.56$6.38$1.19
2014XML pending. An XML filing is linked for this year, but detailed extraction is still pending.$2.42$0.95$1.47$6.99$6.49$0.50
2013XML pending. An XML filing is linked for this year, but detailed extraction is still pending.$1.39$0.41$0.98$3.74$2.74$0.99
2012Facts available. Structured filing facts are available, but richer extracted sections are limited.$0.12$0.14$0.02$0.06$0.07$0.02