Attach to Form 990 or Form 990-EZ.
Go to
www.irs.gov/Form990 for instructions and the latest information.
| (i) Name of supported organization | (ii) EIN | (iii) Type of organization (described on lines 1- 10 above (see instructions)) | (iv) Is the organization listed in your governing document? | (v) Amount of monetary support (see instructions) | (vi) Amount of other support (see instructions) | |
|---|---|---|---|---|---|---|
| Yes | No | |||||
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Total |
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Calendar year
(or fiscal year beginning in)
![]() |
(a) 2019 | (b) 2020 | (c) 2021 | (d) 2022 | (e) 2023 | (f) Total | |
|---|---|---|---|---|---|---|---|
| 1 | Gifts, grants, contributions, and membership fees received. (Do not include any "unusual grant.") .. | 12,978,641 | 17,810,315 | 23,061,454 | 23,557,036 | 28,598,217 | 106,005,663 |
| 2 | Tax revenues levied for the organization's benefit and either paid to or expended on its behalf .... | ||||||
| 3 | The value of services or facilities furnished by a governmental unit to the organization without charge.. | ||||||
| 4 | Total. Add lines 1 through 3 | 12,978,641 | 17,810,315 | 23,061,454 | 23,557,036 | 28,598,217 | 106,005,663 |
| 5 | The portion of total contributions by each person (other than a governmental unit or publicly supported organization) included on line 1 that exceeds 2% of the amount shown on line 11, column (f) .. | 6,616,597 | |||||
| 6 | Public support. Subtract line 5 from line 4. | 99,389,066 | |||||
Calendar year
(or fiscal year beginning in)
![]() |
(a) 2019 | (b) 2020 | (c) 2021 | (d) 2022 | (e) 2023 | (f) Total | |
|---|---|---|---|---|---|---|---|
| 7 | Amounts from line 4.. | 12,978,641 | 17,810,315 | 23,061,454 | 23,557,036 | 28,598,217 | 106,005,663 |
| 8 | Gross income from interest, dividends, payments received on securities loans, rents, royalties and income from similar sources... | 156,753 | 5,817 | 6,633 | 403,834 | 949,583 | 1,522,620 |
| 9 | Net income from unrelated business activities, whether or not the business is regularly carried on.. | ||||||
| 10 | Other income. Do not include gain or loss from the sale of capital assets (Explain in Part VI.).. | ||||||
| 11 | Total support. Add lines 7 through 10 | 107,528,283 | |||||
Calendar year (or fiscal
year beginning in) ![]() |
(a) 2019 | (b) 2020 | (c) 2021 | (d) 2022 | (e) 2023 | (f) Total | |
|---|---|---|---|---|---|---|---|
| 1 | Gifts, grants, contributions, and membership fees received. (Do not include any "unusual grants.") . | ||||||
| 2 | Gross receipts from admissions, merchandise sold or services performed, or facilities furnished in any activity that is related to the organization's tax-exempt purpose | ||||||
| 3 | Gross receipts from activities that are not an unrelated trade or business under section 513 ..... | ||||||
| 4 | Tax revenues levied for the organization's benefit and either paid to or expended on its behalf... | ||||||
| 5 | The value of services or facilities furnished by a governmental unit to the organization without charge | ||||||
| 6 | Total. Add lines 1 through 5 | ||||||
| 7a | Amounts included on lines 1, 2, and 3 received from disqualified persons | ||||||
| b | Amounts included on lines 2 and 3 received from other than disqualified persons that exceed the greater of $5,000 or 1% of the amount on line 13 for the year. | ||||||
| c | Add lines 7a and 7b.. | ||||||
| 8 | Public support. (Subtract line 7c from line 6.) | ||||||
Calendar year
(or fiscal year beginning in)
![]() |
(a) 2019 | (b) 2020 | (c) 2021 | (d) 2022 | (e) 2023 | (f) Total | |
|---|---|---|---|---|---|---|---|
| 9 | Amounts from line 6... | ||||||
| 10a | Gross income from interest, dividends, payments received on securities loans, rents, royalties and income from similar sources.. | ||||||
| b | Unrelated business taxable income (less section 511 taxes) from businesses acquired after June 30, 1975. | ||||||
| c | Add lines 10a and 10b. | ||||||
| 11 | Net income from unrelated business activities not included on line 10b, whether or not the business is regularly carried on. | ||||||
| 12 | Other income. Do not include gain or loss from the sale of capital assets (Explain in Part VI.) .. | ||||||
| 13 | Total support. (Add lines 9, 10c, 11, and 12.).. | ||||||
| Section A - Adjusted Net Income | (A) Prior Year |
(B) Current Year (optional) |
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| 1 | Net short-term capital gain | 1 | ||||
| 2 | Recoveries of prior-year distributions | 2 | ||||
| 3 | Other gross income (see instructions) | 3 | ||||
| 4 | Add lines 1 through 3 | 4 | ||||
| 5 | Depreciation and depletion | 5 | ||||
| 6 | Portion of operating expenses paid or incurred for production or collection of gross income or for management, conservation, or maintenance of property held for production of income (see instructions) | 6 | ||||
| 7 | Other expenses (see instructions) | 7 | ||||
| 8 | Adjusted Net Income (subtract lines 5, 6 and 7 from line 4) | 8 | ||||
| Section B - Minimum Asset Amount | (A) Prior Year |
(B) Current Year (optional) |
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| 1 | Aggregate fair market value of all non-exempt-use assets (see instructions for short tax year or assets held for part of year): | 1 | ||||
| a | Average monthly value of securities | 1a | ||||
| b | Average monthly cash balances | 1b | ||||
| c | Fair market value of other non-exempt-use assets | 1c | ||||
| d | Total (add lines 1a, 1b, and 1c) | 1d | ||||
| e |
Discount claimed for blockage or other factors (explain in detail in Part VI): |
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| 2 | Acquisition indebtedness applicable to non-exempt use assets | 2 | ||||
| 3 | Subtract line 2 from line 1d | 3 | ||||
| 4 | Cash deemed held for exempt use. Enter 0.015 of line 3 (for greater amount, see instructions). | 4 | ||||
| 5 | Net value of non-exempt-use assets (subtract line 4 from line 3) | 5 | ||||
| 6 | Multiply line 5 by 0.035 | 6 | ||||
| 7 | Recoveries of prior-year distributions | 7 | ||||
| 8 | Minimum Asset Amount (add line 7 to line 6) | 8 | ||||
| Section C - Distributable Amount | Current Year | |||||
| 1 | Adjusted net income for prior year (from Section A, line 8, Column A) | 1 | ||||
| 2 | Enter 85% of line 1 | 2 | ||||
| 3 | Minimum asset amount for prior year (from Section B, line 8, Column A) | 3 | ||||
| 4 | Enter greater of line 2 or line 3 | 4 | ||||
| 5 | Income tax imposed in prior year | 5 | ||||
| 6 | Distributable Amount. Subtract line 5 from line 4, unless subject to emergency temporary reduction (see instructions) | 6 | ||||
| Section D - Distributions | Current Year | |
|---|---|---|
| 1 Amounts paid to supported organizations to accomplish exempt purposes | 1 | |
|
2
Amounts paid to perform activity that directly furthers exempt purposes of supported organizations, in excess of income from activity |
2 | |
| 3 Administrative expenses paid to accomplish exempt purposes of supported organizations | 3 | |
| 4 Amounts paid to acquire exempt-use assets | 4 | |
| 5 Qualified set-aside amounts (prior IRS approval required - provide details in Part VI) | 5 | |
| 6 Other distributions (describe in Part VI). See instructions | 6 | |
| 7Total annual distributions. Add lines 1 through 6. | 7 | |
|
8
Distributions to attentive supported organizations to which the organization is responsive (provide details in Part VI). See instructions |
8 | |
| 9 Distributable amount for 2023 from Section C, line 6 | 9 | |
| 10 Line 8 amount divided by Line 9 amount | 10 | |
| Section E - Distribution Allocations (see instructions) |
(i) Excess Distributions |
(ii) Underdistributions Pre-2023 |
(iii) Distributable Amount for 2023 |
|
|---|---|---|---|---|
| 1 Distributable amount for 2023 from Section C, line 6 | ||||
|
2
Underdistributions, if any, for years prior to 2023 (reasonable cause required-- explain in Part VI).
See instructions. |
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| 3 Excess distributions carryover, if any, to 2023: | ||||
| a From 2018....... | ||||
| b From 2019....... | ||||
| c From 2020....... | ||||
| d From 2021....... | ||||
| e From 2022....... | ||||
| fTotal of lines 3a through e | ||||
| g Applied to underdistributions of prior years | ||||
| h Applied to 2023 distributable amount | ||||
|
i
Carryover from 2018 not applied (see instructions) |
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| j Remainder. Subtract lines 3g, 3h, and 3i from line 3f. | ||||
| 4Distributions for 2023 from Section D, line 7: | ||||
| $ | ||||
| a Applied to underdistributions of prior years | ||||
| b Applied to 2023 distributable amount | ||||
| c Remainder. Subtract lines 4a and 4b from line 4. | ||||
|
5
Remaining underdistributions for years prior to 2023, if any. Subtract lines 3g and 4a from line 2. If the amount is greater than zero, explain in Part VI. See instructions. |
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6
Remaining underdistributions for 2023. Subtract lines 3h and 4b from line 1. If the amount is greater than zero, explain in Part VI. See instructions. |
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7 Excess distributions carryover to 2024. Add lines 3j and 4c. |
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| 8 Breakdown of line 7: | ||||
| a Excess from 2019..... | ||||
| b Excess from 2020..... | ||||
| c Excess from 2021..... | ||||
| d Excess from 2022..... | ||||
| e Excess from 2023..... | ||||
| Facts And Circumstances Test |
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| Return Reference | Explanation |
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| Software ID: | |
| Software Version: |
| Return Reference | Explanation |
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| FORM 990, PART III, LINE 4A, DESCRIPTION OF PROGRAM SERVICES | CP-RND WAS FOUNDED IN SEPTEMBER 2022 PURSUANT TO THE ACT FOR ALS IN ORDER TO DEVELOP COLLABORATIONS THAT ADVANCE TREATMENTS TO IMPROVE THE LIVES OF THOSE AFFECTED BY RARE NEURODEGENERATIVE DISEASES, INCLUDING ALS. IN THE FIRST TWO YEARS OF THE PROJECT, CP-RND HAS ACHIEVED IMPORTANT MILESTONES REGARDING THE FOCUS ON PATIENT-FOCUSED DRUG DEVELOPMENT, DATA COLLECTION AND AGGREGATION, AND DRUG DEVELOPMENT TOOL SOLUTIONS TO ADDRESS THE GAPS IN DRUG DEVELOPMENT FOR RARE NEURODEGENERATIVE DISEASES. CP-RND ALSO ESTABLISHED A PWLE WORKING GROUP IN COORDINATION WITH ACCELERATING MEDICINE PARTNERSHIP (AMP IN FNIH) TO GIVE AND RECEIVE FEEDBACK ON ALS-RELATED PROJECTS. CP-RND HAS INITIATED WORKING GROUPS FOCUSED ON CLINICAL OUTCOME ASSESSMENTS (COAS), DIGITAL HEALTH TECHNOLOGY TOOLS AND DATA IN ORDER COLLABORATE WITH KEY OPINION LEADERS TO MORE CLEARLY IDENTIFY AND ADDRESS GAPS IN DRUG DEVELOPMENT. UPON RECOMMENDATION BY THE FDA, CP-RND COMPLETED A THOROUGH EVALUATION OF THE COMMON COAS USED IN ALS CLINICAL TRIALS AGAINST THE FDA'S ROADMAP FOR DEVELOPING PATIENT-FOCUSED OUTCOME MEASURES AND MADE RECOMMENDATIONS ON METHODS TO IMPROVE OR DEVELOP COAS FOR KEY CONCEPTS IMPORTANT TO PWLE WITH ALS. CP-RND HAS RESEARCHED OVER 70 LARGE DATABASES, WITH A PRIORITY LISTING CREATED AND SHARED WITH NIH, FNIH AND FDA. CP-RND, IN PARTNERSHIP WITH RDCA-DAP IS WORKING TO CREATE AN ALS DATA KNOWLEDGE PORTAL CONTAINING PRIORITIZED DATASETS THAT CAN BE STANDARDIZED AND USED BY STAKEHOLDERS TO ADVANCE RESEARCH IN ALS INCLUDING THE DEVELOPMENT OF DRUG DEVELOPMENT TOOLS. OF THE PRIORITY LISTING CREATED, THREE DATA SETS HAVE BEEN RECEIVED AND ARE IN VARIOUS STAGES OF CURATION AND AGGREGATION. PROGRESS FOR DATA DICTIONARY COLLECTION AND DATA SHARE AGREEMENTS REMAIN ONGOING WITH THE REMAINING DATA SETS IDENTIFIED. |
| FORM 990, PART III, LINE 4B, DESCRIPTION OF PROGRAM SERVICES | RDCA-DAP IS AN FDA-FUNDED INITIATIVE THAT PROVIDES A CENTRALIZED AND STANDARDIZED INFRASTRUCTURE TO SUPPORT AND ACCELERATE RARE DISEASE CHARACTERIZATION WITH THE GOAL OF ACCELERATING THERAPY DEVELOPMENT. THE RDCA-DAP EFFORT STARTED IN 2019 AND LAUNCHED THE PUBLIC INTERFACE OF THE PLATFORM IN SEPTEMBER 2021. TO DATE, THE PLATFORM HOSTS OVER 80 RARE DISEASE DATA SETS REPRESENTING OVER 41 DISEASE STATES. THERE ARE NOW 642 PLATFORM USERS AND 43 ACTIVE WORKSPACES, WHERE USERS ACTIVELY LEVERAGE THE RDCA-DAP DATABASE TO INFORM RARE DISEASE RESEARCH AND DRUG DEVELOPMENT ACTIVITIES. ACTIVE AGREEMENTS CURRENTLY INCLUDE 42 DATA CONTRIBUTION AGREEMENTS, 8 NORD DATA CONTRIBUTION COVERSHEETS, 3 CORDS REGISTRY DATA CONTRIBUTION COVERSHEETS, AND 34 TASK FORCE AGREEMENTS. RDCA-DAP LEVERAGED THE FRIEDREICH'S ATAXIA DATABASE TO DEVELOP A CLINICAL TRIAL SIMULATION TOOL TO INFORM TRIAL DESIGN IN FA. THE TOOL ENTERED REGULATORY SUBMISSION TO THE OFFICE OF CLINICAL PHARMACOLOGY IN SEPTEMBER 2024. THREE TASK FORCES STRUCTURED AS SMALL SCALE PUBLIC PRIVATE PARTNERSHIPS WERE LAUNCHED IN 2023 AND 2024 TO LEVERAGE THE DATABASE AND ADVANCE DRUG DEVELOPMENT SOLUTIONS. THE PROGRESSIVE SUPRANUCLEAR PALSY AND LIMB-GIRDLE MUSCULAR DYSTROPHY TASK FORCES ARE ADVANCING DISEASE PROGRESSION MODELING TO INFORM TRIAL DESIGN, AND THE RARE MITOCHONDRIAL DISEASES TASK FORCE IS FOCUSED ON DATA AGGREGATION TO DEVELOP RECOMMENDATIONS AIMED AT ENHANCING REAL WORLD DATA COLLECTION AND BEST PRACTICES. 2023 MARKED THE RELEASE OF CRITICAL PATH ONTOLOGY (CPONT) APPLICATION, WHICH FACILITATES MAPPING AND LINKING BETWEEN DIFFERENT STANDARDIZED DATA VOCABULARIES. IN ADDITION, A PUBLICATION WAS PUBLISHED IN THE JOURNAL OF PHARMACOKINETICS AND PHARMACODYNAMICS (BARRETT JS ET AL., 2023). LASTLY, THE PROGRAM MADE A SIGNIFICANT IMPACT ON PROFESSIONAL DEVELOPMENT IN 2024, WITH EIGHT WEBINARS HELD AS PART OF ITS PROFESSIONAL DEVELOPMENT SERIES, REACHING 772 REGISTRANTS AND 37,344 ATTENDEES. |
| FORM 990, PART III, LINE 4C, DESCRIPTION OF PROGRAM SERVICES | CURE DRUG REPURPOSING COLLABORATORY (CDRC) WAS FOUNDED IN 2020 AND IS DESIGNED TO CAPTURE REAL-WORLD CLINICAL OUTCOME DATA TO ADVANCE DRUG REPURPOSING AND INFORM FUTURE CLINICAL TRIALS FOR DISEASES OF HIGH UNMET MEDICAL NEED. THE PAST YEAR REPRESENTED SOME INCREDIBLE PROGRESS FROM THE COLLABORATORY. CDRC CONTINUED SUPPORTING CURE ID ACROSS A WIDE RANGE OF FDA OBJECTIVES INCLUDING FINALIZING A CASE REPORT FORM (CRF) TO CAPTURE DATA ON RARE CANCERS. THIS CRF WAS USER TESTED AND HAS BEEN USED TO CAPTURE DATA. CDRC HAS ACTIVELY WORKED TO PROMOTE THE CONTINUED USE OF ESTABLISHED ELECTRONIC HEALTH RECORDS (EHR) DATA PIPELINES INCLUDING ESTABLISHING A PROTOCOL AND OBTAINING IRB APPROVAL FOR AN EXPANDED DRUG REPURPOSING REGISTRY IN CRITICAL CARE SETTINGS. MULTIPLE FUNDING APPLICATIONS HAVE BEEN SUBMITTED FOR THIS WORK WITH PARTNERS, BUT NONE HAVE BEEN SUCCESSFUL SO FAR. FROM A DATA PERSPECTIVE, CDRC EXTRACTED RECORDS OF 172,867 PATIENTS HOSPITALIZED FOR ACUTE COVID-19 INFECTION FROM 20 HEALTH CARE SYSTEMS. THESE RECORDS WERE HARMONIZED TO THE OMOP COMMON DATA MODEL AND ARE AVAILABLE TO RESEARCHERS THROUGH THE SOCIETY OF CRITICAL CARE MEDICINE. XX PATIENT RECORDS WERE CURATED TO CDISC SDTM BY THE INFECTIOUS DISEASE DATA OBSERVATORY AT OXFORD UNIVERSITY, AND AN ANALYSIS DATASET WAS MADE AVAILABLE IN THE CURE ID APPLICATION. CDRC ALSO PARTNERED WITH XCURES TO EXTRACT 78 SARCOMA CASES FROM ELECTRONIC HEALTH RECORDS (EHR). |
| FORM 990, PART VI, SECTION A, LINE 2 | JEFF JACOB AND SHAUN KIRKPATRICK HAVE A BUSINESS RELATIONSHIP. |
| FORM 990, PART VI, SECTION B, LINE 11B | FORM 990 IS PREPARED BY AN EXTERNAL CPA FIRM USING INFORMATION PROVIDED BY THE ORGANIZATION. THE FORM IS REVIEWED BY THE ORGANIZATION'S CFO, PRESIDENT/COO, CEO, THE BOARD AUDIT, FINANCE, AND RISK COMMITTEE, AND THE BOARD OF DIRECTORS PRIOR TO BEING FINALIZED. |
| FORM 990, PART VI, SECTION B, LINE 12C | ALL MEMBERS OF THE BOARD OF DIRECTORS AND ALL OFFICERS OF THE ORGANIZATION ARE REQUIRED TO FILL OUT A CONFLICT OF INTEREST FORM ANNUALLY. THE RESULTS ARE COMPILED AND REVIEWED BY THE BOARD'S AUDIT, FINANCE, AND RISK COMMITTEE. ANY ACTUAL OR PERCEIVED CONFLICTS THAT HAVE THE POTENTIAL TO BIAS ANY DISCUSSIONS OR DECISIONS BY THE BOARD ARE DISCUSSED BY THE BOARD. ANY DIRECTOR WITH A REAL OR POTENTIAL CONFLICT WILL RECUSE THEMSELVES FROM ANY DISCUSSION OR DECISION WHERE THE CONFLICT HAS A BEARING. |
| FORM 990, PART VI, SECTION B, LINE 15 | A BOARD OF DIRECTORS COMPENSATION COMMITTEE MEETS AND REVIEWS EXECUTIVE COMPENSATION ANNUALLY. PERIODICALLY, THE COMMITTEE REQUESTS A COMPENSATION ANALYSIS TO DETERMINE IF EMPLOYEE COMPENSATION HAS REMAINED WITHIN MARKET RANGE OR IF ADJUSTMENTS ARE REQUIRED. THIS INFORMATION IS THEN USED AS A BASIS FOR THE COMPENSATION COMMITTEE'S RECOMMENDATION TO THE BOARD OF DIRECTORS. AN OVERALL SALARY PROGRAM FOR EMPLOYEES MUST BE APPROVED BY THE BOARD OF DIRECTORS COMPENSATION COMMITTEE BEFORE IMPLEMENTATION. ALL EMPLOYEE SALARY INCREASES MUST BE APPROVED BY THE PRESIDENT/COO. |
| FORM 990, PART VI, SECTION C, LINE 19 | ARTICLES OF INCORPORATION CAN BE FOUND ON THE ARIZONA CORPORATION COMMISSION WEBSITE. THE CONFLICT OF INTEREST POLICY AND THE FINANCIAL STATEMENTS (VIA THE ANNUAL REPORT) ARE POSTED ON THE INSTITUTE'S WEBSITE. |
| Software ID: | |
| Software Version: |