Count Me in Inc

“Form 990, part i, line 1 the mission of count me in is to transform cancer care and outcomes by empowering cancer patients to accelerate biomedical research by sharing their samples, their clinical information, and their voices.”

“Form 990, part iii, line 4a as of june 30, 2023, count me in has launched nine projects to date, spanning rare, common and pediatric cancers: the metastatic breast cancer project (2015), the angiosarcoma project (2017), the metastatic prostate cancer project (2018), the esophageal and stomach cancer project (2018), the brain tumor project (2019), the osteosarcoma project (2020), the colorectal cancer project (2021), and the participant engagement and cancer genome sequencing (pe-cgs) osteosarcoma and leiomyosarcoma projects (2022). In addition, the "all cancers" website launched in august 2021, and enables all patients in the united states and canada who have ever been diagnosed with any type of cancer to join count me in. Our capabilities and infrastructure include the ability to: (a) engage and consent patients remotely; (b) collect longitudinal patient-reported data; (c) ship and receive saliva and blood collection kits from patients; (d) request and receive medical records and tumor tissues from institutions across the u.s.; (e) abstract clinical data from medical records and patient-reported data; (f) perform genomic characterization (whole exome sequencing (wes), rnaseq, whole genome sequencing (wgs)) on tumor, saliva, and plasma-derived cell-free dna; (g) analyze and interpret clinically annotated somatic and germline genomic data; and (h) share all de-identified data acquired or generated in the project regularly- pre-publication and without restrictions-via public/accessible databases (cbioportal, dbgap, nci genomic data commons). Across the projects active in fiscal year 2023, we have registered over 12,400 patients from all 50 u.s. States and canada - including both adult and pediatric participants. Over 7,800 patients from more than 1,800 institutions have fully enrolled. We have collected more than 3,900 medical records, 4,500 saliva samples, 1,900 blood samples, and 1,600 tumor specimens from participants. Count me in has publicly shared data from the mbcproject, ascproject, and mpcproject on several platforms, including the genomic data commons, dbgap, cbioportal and through our own data browsers. This publicly available de-identified data has been used by over 90 researchers independent of the count me in team. Count me in is committed to improving representation and inclusiveness in cancer research by intentionally engaging with patients and advocates from underrepresented backgrounds. In february 2023, the #ampblack voices digitial initiative, which highlights the lived experiences and disparities that exist for black/african american cancer patients was adapted for broadcast and digital screens. Hosted by boston's local pbs affiliate, gbh, and recorded on the stories from the stage program, two recorded episodes were aired on broadcast and released digitally in june. We also launched a new pilot in april 2023 with the tigerlily foundation to develop culturally relevant and appropriate materials for recruitment and enrollment of black/african american patients with metastatic breast cancer in our study.”

“Form 990 part vi, line 2 nikhil wagle (president until december 2022), laurie glimcher (director until june 2023), and william hahn (director beginning june 2023) have a business relationship. Reed jobs and matt bettonville have a business relationship. Todd golub, jesse souweine, diane diehl (interim president beginning january 2023), mary davis, saony portuhondo (assistant clerk beginning march 2023) roeshana moore-evans (clerk until december 2022), and whitney wade (assistant clerk until february 2023) have a business relationship.”

“Form 990 part vi, line 3 count me in paid $2,585,356 to broad institute, inc., an unrelated organization, in calendar year 2022 for progam and management/general staffing. These personnel performed the daily operations of count me in under the management of the count me in director/president. Included in these payments was $182,215 for services performed by roeshana moore-evans, clerk (until december 2022) and $55,664 for services performed by whitney wade, assistant clerk (until february 2023). These payments to broad institute were unrelated to their officer roles. Additionally, count me in paid $1,047,241 to broad institute, inc., in calendar year 2022 for administrative services (human resources, finance, sponsored research, it, general administration, etc.). These fees included the hours that mary davis (treasurer; clerk beginning december 2022) spent devoted to count me in, but the amounts billed were not itemized by function or individual.”

“Form 990 part vi, line 6 the members of count me in inc. Consist of the broad institute, inc., emerson collective llc, and dana-farber cancer institute, inc.”

“Form 990 part vi, line 7a and 7b members exercise all powers consistent with the activities and affairs of count me in. The members have all powers and rights as are vested in them by law, the articles of organization and the by-laws, which include amendment of the by-laws and articles of incorporation, the election or replacement of directors and dissolution of the organization. The members shall hold an annual meeting for election of directors and for the conduct of such other business as may come before the meeting.”

“Form 990 part vi, line 8b the organization does not have any committees.”

“Form 990 part vi, line 11b count me in's form 990 was prepared with the assistance of the organization's auditors, pricewaterhousecoopers llp. The full board of directors received a completed copy of the form 990 prior to the form being filed with the irs.”

“Form 990 part vi, line 12c each director and officer has an ongoing duty to place the interest of count me in foremost in any dealing with the organization. Each has a continuing responsibility to comply with the requirements of this policy and to disclose the existence of any actual or possible conflict of interest. Annually, each director and officer shall acknowledge their familiarity with this policy and shall disclose in writing to the clerk any existing financial or other material interests subject to this policy by completing a conflict of interest disclosure statement. The conflict of interest disclosure statements shall be reviewed by the clerk. Any issues not previously disclosed shall be referred by the clerk to the board. The conflict of interest disclosure statements shall be retained in the confidential files of the clerk. In the event of potential conflict, an interested person may make a presentation at the board meeting, but after such presentation, he or she will leave the meeting during the discussion of, and the vote on, the transaction or arrangement that results in the conflict of interest.”

“Form 990 part vi, line 18 the form 990 is made available upon request and on guidestar.org. The form 1023 is made available upon request.”

“Form 990 part vi, line 19 count me in's audited financial statements are attached to the annually filed massachusetts form pc, which is available to the public. The organization's governing documents and conflict of interest policy are available to the public upon request.”

“Form 990 part vii, section b, line 1b services provided by the broad institute, inc. Include program and management/general staffing, data sciences and engineering, sequencing, and administrative support.”

“Description:program & mgmt staffing total fees:2233647”

“Description:administrative services total fees:977000”

“Description:data sciences & engineers total fees:430466”

“Description:sequencing total fees:341995”

“Description:med. Record abstraction total fees:72040”

“Description:other total fees:40872”