CDRC and CURE ID FAQs

The Cure Drug Repurposing Collaboratory (CDRC) will provide a forum for the exchange of clinical practice data to inform potential new uses of existing drugs for areas of high unmet medical need, advancing research in these areas. The Collaboratory will also create a network connecting major treatment centers, academic institutions and researchers, private practitioners, government facilities and health care professionals around the world.

CDRC is a public-private partnership initiated in June 2020 by C-Path and the U.S. Food and Drug Administration (FDA) in partnership with the National Center for Advancing Translational Sciences (NCATS), part of the National Institutes of Health (NIH). The collaboration CDRC is connected and working with, the FDA-NCATS CURE ID* platform.

The initiative includes emerging/reemerging diseases, including COVID-19, anti-microbial drug resistant infections, neglected infectious diseases as well as rare oncology diseases where there are limited treatment options. The Collaboratory is strongly interested in capturing data from diverse populations including pediatric and pregnant women.

CURE ID is an internet-based repository that lets the clinical community report novel uses of existing drugs for difficult-to-treat infectious diseases through a website, a smartphone or other mobile device. The platform enables the crowdsourcing of medical information from health care providers to facilitate the development of new treatments for neglected diseases.

CURE ID is a collaboration between the FDA and the National Center for Advancing Translational Sciences (NCATS), part of the National Institutes of Health (NIH). FDA and NIH are also collaborating with the World Health Organization and the Infectious Disease Society of America to assess the global utility of the CURE ID.

No, this is data collected as part of the treatment that is done at the physician’s discretion during routine clinical care. The data based on this clinical care is simply captured after the fact and shared in a completely de-identified case report form.

The methods are meant to be seen as complimentary and part of the broader real-world evidence (RWE) initiatives at FDA and NIH. Some of the key differences that set this apart from N3C, the Evidence Accelerator, and others is that: 1) the CURE ID platform is global and would seek data from outside the US, in addition to national data sources; 2) data will be combined from several different types of sources – EHRs, but also registries, clinician-submitted cases, and cases extracted from the published literature; 3) the data would be completely accessible at the de-identified patient level to any health care professional or researcher, without a data use agreement, making it much more accessible; and 4) the information collected is quite high-level and uncomplicated in the form of a completely de-identified case report form. Similarities and differences between N3C and CURE ID:

By entering case studies into the app, health care providers have the opportunity to help uncover new uses for approved drugs and help people in need get life-saving treatments. Situations with disappointing results are equally important to enter, so that others can learn from those experiences and not replicate that treatment protocol. Health care providers may have data already. They are invited to join the CDRC disease working groups to help identify specific questions that they would like answered. Collected data metrics can be made available to this community and updated over time. People who contribute to the CURE ID app may also get recognition in the form of a certificate from FDA and NIH.

Even if health care providers don’t have an experience to share, they can also use the app to search for novel uses of drugs and gain valuable insight, which can inform their future practice and clinical endeavors. People can also use the Discussion Forum to connect with others and share similar experiences and questions.

This is an ongoing effort initiated in June 2020 and will be a multi-year effort. Please contact CDRC, CDRC@c-path.org, for further information.

CURE ID continues to expand the number of clinicians involved, specific diseases it focuses on and methods of data capture (such as automating collection from EHRs and registries). The long-term goal is for the public-private partnership (CDRC) to oversee and coordinate collaboration between stakeholders.The mission of the group is to generate real-world evidence regarding the safety and effectiveness of the use of off-label drugs with high public health impact and low commercial viability/interest for drug repurposing.

Visit the CURE ID website here. You can download the App from the App or Play Store by searching for “CURE ID.” A videocast of the Repurposing Generics workshop at which CURE ID was launched is available here. More information on the CURE ID platform is available on the FDA website here. To join the CURE Drug Repurposing Collaboratory, please send inquiries to CDRC@c-path.org.

View a demonstration and walk-through of the app and the entry of a case report here — Data extraction example.

To enter a case the user must a minimum of seven required questions. Once they do so they have the option to either “Quick Submit” or they can continue and answer any of the remaining 20 optional questions in the complete submission. They also have the option to save their case without submitting and return to it at a later date, or to submit it and update it later by going in and editing the case. If they wish, they are provided an option to anonymize a particular submission so that their name will not be visibly associated with the case or discussion.To enter a discussion the user can either specify a particular disease or choose “disease not specified.” They will then enter a free text title and body of the discussion post, which has a limit of 4,096 characters.
In addition, users can comment on case reports or discussion posts submitted by other users.

Case reports and discussions are uploaded in real-time and reviewed for quality and appropriateness within 12-24 hours by CURE ID moderators. Moderators may make small adjustments (i.e., remove personally identifiable information (hat is accidentally included) or seek additional information or clarifications from the report’s author. They will comment on the post with any changes that are made. If a report is deemed to be inappropriate or otherwise requiring deletion, it will be reviewed by a second moderator. If the second moderator concurs, the post may be removed, and the report’s author will be emailed with an explanation of the decision.

If a user enters a case report the data is all entered in a completely de-identified fashion so as not to trigger any patient privacy concerns. Users should be certain that they don’t include any public health information (PHI) in the free-text entry fields. Because the data was collected for the purpose of clinical care and is shared in a deidentified manner, it is not considered research and thus, patient consent is not required.

Interested users who are licensed health care providers complete a very brief registration where they set up an email and password and state their medical qualifications. Once they have registered, a user can now explore the case reports, discussion posts, and clinical trials in the platform; they can submit their own case report or discussion post; or they can view the Newsfeed.Those who can currently enter data are clinicians, physicians, nurses, nurse practitioners, etc.
If you are not a health professional but can contribute to discussions (i.e., as a veterinarian, epidemiologist, infectious disease researcher, etc.) please contact CURE ID or CDRC to find out how you can download and use the app.

The platform is only open to licensed health care professionals so that clinicians will feel comfortable sharing their treatment experiences – both positive and negative – in a safe, clinical community. Registered users have access to all of the data and can contact the help desk for a download of all of the data in the database if they wish to conduct their own research with it.

The data in CURE ID will be digested by CDRC through a dedicated bioinformatic pipeline and the insights generated will be broadly shared with the public via CURE ID once the results have been reviewed and vetted within the Collaboratory.

Shared publicly means that once your data is transformed into the CURE ID format (and it is certain that any PII has been removed), the case report with patient-level data is openly displayed to users who have signed up to use the platform. The information is in addition to the other sources of case reports (electronic health records, registries, literature, etc.).

Yes, the deidentified data as translated into the case report form would be displayed in CURE ID and thus shared with other app users. One can also request to download the data. The intent here is to share what may be working but also what may not be working with other physicians who are desperately looking for ways in which to treat patients in the absence of data.

Yes, we are collecting AEs and have set up a system to automatically share and upload any case reports that contain AEs with the FDA Medwatch AE reporting platform.

No, not at all. The data won’t be combined with data on the same patients or link them, the data will be combined with other sources of case reports, such as registries and clinician-submitted cases to calculate an aggregate of patients treated with the same drug or drug regimens.

Users do not have to sign a data use agreement of any kind. (see case report form for the snapshot of data elements being collected) during the course of routine clinical care (and therefore not human subjects research), ensuring that the data transferred is HIPAA compliant and completely de-identified per Safe Harbor requirements, the data can be transferred without a data use agreement. Typically, the individual or institution would translate the patient’s record or EHR/registry data into the CURE ID case report form at their site, before sending the de-identified case report form to the CURE ID platform. The data is then made openly accessible to all qualified clinicians and researchers who register on the site.

At the present time, we are asking contributors to share data broadly which negates the rationale to implement a data use agreement since their data would be shared publicly through the CURE ID platform without restrictions.

Yes, it’s clinical data, but high level – for example: was the patient diagnosed with COVID-19 by PCR? After said diagnosis, what drugs were given to the patient? What was the outcome of treatment (did the patient die, admitted to ICU, discharged from ICU to floor, discharged from hospital, etc. – translated to the options of “patient improved,” “patient deteriorated,” etc.). The CDRC and CURE ID team can assist in creating a translation infrastructure which would then automate the transfer of information from your records to the CURE ID Case Report Form, and then we would upload the case reports and they would be reviewed by clinicians on our staff for quality and accuracy.

Historically, yes, we have collected standardized CURE ID case report forms directly from clinicians and other health care providers using the electronic platform we developed. We have also used this same case report form as an extraction tool to review and enter published case reports into the database. View this as a transformation of your data to populate the simplified CURE ID case report form at your site. An automated system could be used to transform the EHR data at your institutional site into the CURE ID case report form, which would then be sent to NCATS for inclusion on the server.

The ideal scenario would be to use automation to extract the information from the EHRs into the CURE ID template, using a series of rules and translations. However, we realize that that may not be possible. If that is the case, we would be happy to explore using data entry specialists, hired by your . It is also possible, that CURE ID could use a combination of the two – where some data is able to be automatically extracted from the EHRs into CURE ID, and other information requires a human.The development of AI tools will help to translate the data into the case report form, but have human curators review a prespecified portion to ensure that reports are being transformed correctly and that it is of high quality. Some tools have already been developed but will need to be refined to address this specific issue. Collaborators from USG resources and the informatics research community can be accessed to help address the challenges.

No, health care providers are able to enter cases that utilize generic and/or branded drug products. It should be noted, however, that submitting a case report to CURE ID is not a substitute for reporting required under public health or legal requirements. There has been an emphasis on off-patent drugs because they are cheaper to purchase and, in theory, could be easier to access. If a drug, disease, or organism you are interested in reporting a case on is not in the drop-down menu of the app, it can be added by typing the text and then hitting enter.

Off-patent drugs are regulatory-approved medical products that no longer have patent protection. Repurposing approved drugs for new clinical indications can potentially offer an efficient drug-development pathway for treatments of diseases and conditions that have few or no therapeutic options. Advantages of using off-patent drugs in this manner includes cost savings, in that such drugs are often available from a variety of manufacturers. In this same context, however, smaller profit margins may exist for companies that repurpose drugs in the same dosage and formulation for new indications, providing less incentive for repurposing.

No, the focus is on the treatment of this particular infection.

• Stood up the Medicines Repurposing International Network (MERIT) in collaboration with NHS. The network consists of fourteen organizations spanning eight countries plus the European Union and the World Health Organization. The network supports collaboration and communication between publicly funded drug repurposing initiatives.
• Assisted in the development, consensus, finalization, and deployment of a sarcoma clinical case report form for CURE ID with input from multiple stakeholders.
• Initiated contract with xCures to extract data from sarcoma patient EHRs for PEComa cases.
  Students from Clemson University School of Medicine and Interns from CDRC extracted PEComa cases from the literature to CURE ID.
• Established and led monthly sarcoma workgroup calls for patients, clinicians and FDA OCE (Oncology Centers of Excellence) to develop a sarcoma pilot within CURE ID.
• Engaged with stakeholders to determine potential to share data with CURE ID (Broad Institute, National Cancer Institute (NIH), EHE Foundation, and the Insituto Nationale dei Tumori in Milan).
• Aligned with community of international sarcoma clinicians on development of a global master protocol for ultra rare sarcomas and the launch of such a trial (PUSH).
• Partnered with Sarcoma Foundation of America who agreed to host a patient centered webinar (Jan 18, 2024) that introduces the initiative with CDRC, clinician and xCures perspectives followed by questions from patients.
• Engaged Aadi Bio Science to promote CURE ID to their prescriber network to recruit physicians and patients to participate in the sarcoma pilot.\
• Engage with NCI regarding data sharing for rare sarcomas.

• Partnered with HeHealth to review and edit the Mpox CRF on CURE ID and to promote outreach to patients.
• Created an international STI surveillance group under the auspices of WHO with existing surveillance efforts in the US, Canada, and the UK to partner on a project to identify repurposed drugs for Neisseria gonorrhea with additional countries as observers. This group helped create the CRF for Neisseria gonorrhea.
• Organized a monthly Long COVID Clinical Think Tank call series consisting of 27 clinical trialists regulators, academicians and foundations across the US, Canada, and Europe to review and discuss challenges in setting up and designing clinical trials for this disease.
• Created an international implantation mycosis workgroup under the auspices of WHO to partner with treatment clinics in Brazil, Mexico and Madagascar on a project to identify repurposed drugs for four distinct fungal infections with additional countries as observers.
• Developed and finalized a case report form for Implantation Mycosis, sent to NCATS and is now available on CURE ID.

• Finalized clinician and patient case report forms for RASopathies and submitted to NCATS for inclusion in CURE ID.
• Established a patient group to provide stakeholder input.
• Engage NCI regarding RASopathies and their registry.

• Long COVID Outpatient Decentralized Pilot Trial
  • Worked with Berry Consultants and clinical trial collaborators to develop and optimize decentralized trial design for the treatment of patients with Long COVID in the outpatient setting.
  • Identified Principal Investigator and co-Investigator to develop and finalized pilot protocol to assess the feasibility of methods and procedures for later use in a larger scale decentralized platform adaptive randomization clinical trial.
  • Obtained Emory IRB approval for randomized pilot trial treating Long COVID. Submitted IND amendment to FDA for pilot protocol.
  • Posted trial on ClinicalTrials.gov: NCT05946551.
  • Developed Part 11 compliant REDCap database for electronic data capture of trial data.
  • Trial enrollment anticipated to start mid-January, 2024.
• Inpatient Trial
  • Worked with Berry Consultants and clinical trial collaborators to develop and optimize trial design for the treatment of patients with sepsis in the inpatient setting.
  • Identified Principal Investigator and co-Investigators.
  • Identified all necessary variables required to be extracted from EHRs for the trial.
  • Developed a modified Delphi process to generate consensus amongst partners regarding treatment options that should be evaluated first.
  • Working with Every Cure advanced AI engine to identify and rank repurposed drugs of interest to take to the clinic.

• Data transfers received from 7 institutions (>75,000 COVID patients). Projected to exceed 10 institutions and 100K patients for the project.
• Invited to lead RWD and data standards committee at SCCM. Specifically asked to bring regulatory perspective and build strategic partnership to elevate standard of evidence generated across critical care research. C-Path to co-facilitate stakeholder listening session at SCCM annual meeting in January 2024 to explore unmet needs and interest in drug repurposing and regulatory grade research in critical care.
• Invited to serve on common data elements steering committee for National Trauma Research Registry. This project is backed by the DoD and specifically interested in receiving regulatory guidance from CDRC to enhance trauma research on repurposed drugs.
• CDC Grant Sub-award: Pregnant People-Infant Linked Longitudinal Surveillance to sustain, improve, and expand surveillance efforts from entities that have data systems to identify pregnant people-infant linked longitudinal data. The goal is to ensure timely reporting of key exposures and outcomes that impact pregnant people and infants, to improve data quality and share evolving outcome data, to innovate clinical strategies, and to build a strong collaborative network.

• Ravikumar DB, Sivasubramanian BP, Shanmugam SN, Krishnaswamy V, Rabaan A, Al-Tawfig JA, Tirupathi R. Multifaceted realities of scrub typhus: a case series from southern India. Infez Med. 2023 Sep 1;31(3):384-393. doi: 10.53854/liim-3103-12. PMID: 37701392
• Milani B, Dagne DA, Choi HL, Schito M, Stone HA. Diagnostic capacities and treatment practices on implantation mycoses: Results from the 2022 WHO global online survey. PLoS Negl Trop Dis. 2023 Jun 28;17(6):e0011443. doi: 10.1371/journal.pntd.0011443. PMID: 37379338
• Adhikari SD, Chaudhuri S, Boodman C, Gupta M, Schito M, Stone H, Gupta N. Fosfomycin for Non-Urinary Tract Infections: a systematic review. Infez Med. 2023 Jun 1;31(2):163-173. doi: 10.53854/liim-3102-4. PMID: 37283634
• Heavner SF, Anderson W, Kashyap R, Dasher P, Mathé EA, Merson L, Guerin PJ, Weaver J, Robinson M, Schito M, Kumar VK, Nagy P. A Path to Real-World Evidence in Critical Care Using Open-Source Data Harmonization Crit Care Explor. 2023 Apr 3;5(4):e0893. doi: 10.1097/CCE.0000000000000893. PMID: 37025303
• Kogilathota Jagirdhar GS, Rama K, Reddy ST, Pattnaik H, Qasba RK, Elmati PR, Kashyap R, Schito M, Gupta N. Efficacy of Cefoperazone Sulbactam in Patients with Acinetobacter Infections: A Systematic Review of the Literature. Antibiotics (Basel). 2023 Mar 15;12(3):582. doi: 10.3390/antibiotics12030582. PMID: 36978449
• Charles R, Adhikari SD, Mittal A, Chaudhuri S, Gupta M, Khot W, Schito M, Gupta N. Role of tigecycline in the treatment of urinary tract infections: a systematic review of published case reports. Infez Med. 2022 Dec 1;30(4):516-524. doi: 10.53854/liim-3004-5. PMID: 36482959
• Kogilathota Jagirdhar GS, Rama K, Reddy ST, Pattnaik H, Qasba RK, Elmati PR, Kashyap R, Schito M, Gupta N. Efficacy of Cefoperazone Sulbactam in Patients with Acinetobacter Infections: A Systematic Review of the Literature. Antibiotics (Basel). 2023 Mar 15;12(3):582. doi: 10.3390/antibiotics12030582. PMID: 36978449; PMCID: PMC10044834.

• “Results of the 2022 global WHO online survey on diagnostic capacities and treatment practices for implantation (‎deep)‎ mycoses”. Authors: Barbara Milani, Daniel Argaw Dagne, Heather Stone, Marco Schito, David Denning, Roderick Hay, Kingsley Asiedu, Jose Antonio Ruiz Postigo, Stephanie Jourdan, and Junerlyn Farah Virrey Agua. ISBN: 978-92-4-006529-1
• “Drug Repurposing for Pandemic Innovation: Establishing an Effective and Efficient Ecosystem”. Author: Duke-Margolis Center for Health Policy. Co-Authors: Stacey Adam, Luciana Borio, Alan Carr, David Fajgenbaum, Simone Fishburn, Matthew Hall, Anne Heatherington, Matt Hepburn, David Hone, Rob Jordan, Martin Landray,Chris Lindsell, Hilary Marston, Jennifer Miller, Andrea Noda, Sandeep Patel, Revell Phillips, Leonard Sacks, Marco Schito, Kristin Schneeman, Joanna Shields, Tania Simoncelli, Grail Sipes, Heather Stone and Alex Tropsha.

• “Making OMOP Happen: An Implementation Science Approach” Authors: Maya Younoszai, Pam Dasher, Danielle Boyce, and Smith Heavner accepted for the October 20th, 2023, OHDSI Symposium in New Jersey.
• “Repurposing in RASopathies”. Authors: Shira Strongin, and Heather Stone. Presented at the CDRC Annual Meeting in Washington, D.C.
• “Deploying the Edge Tool Suite to Extract Real-World Data: an Implementation Science Approach”. Authors: Maya Younoszai, Danielle Boyce, and Smith Heavner. Presented at the CDRC Annual Meeting in Washington, D.C.\
• “CURE Pregnancy Treatment Repository: Prioritizing Systematic Collection of Real-World Data to Identify Effective Treatments in a Special Population”. Authors: Mili Duggal, Reema Charles, Nalini Oliver, and Heather Stone. Presented at the CDRC Annual Meeting in Washington, D.C.
• “Lowering the OMOP ETL Barrier for Clinical Registries”. Authors: Smith Heavner, Trayson Llano, Zachary Wang, Marco Schito, Heather Stone, Pam Dasher, Tresha Russel, Vishakha Kumar, Ben Saeks, Michael Cooke, Rahul Kashyap, Matt Robinson, and Paul Nagy. Presented at the CDRC Annual Meeting in Washington, D.C. and at 2023 OHDSI Symposium in New Jersey.
• “Landscape Analysis of Drug Treatments for PEComa” Authors: Jamila Johnson, Dakota Makulec, Reema Charles, Marco Schito, and Smith Heavner presented at the CDRC Annual Meeting in Washington, D.C.
• “Leveraging the EPIS Framework to Extract Real-World Data from the Electronic Health Record” Authors: Dasher P., Younoszai M., Boyce D., and Heavner S. Abstract accepted for 16th Annual Conference on the Science of Dissemination and Implementation Science. December 10- 13th, 2023 in Arlington, VA.
• “The Landscape of Infections Caused by Rare Bacterial Pathogens” Authors: Reema Charles, MBBS, MS, Barbara Milani, Daniel Argaw Dagne, Bisma Ali, Heather Stone, MPH, Marco Schito, Raghavendra Tirupathi, MBBS, MD, and Nalini Oliver at IDWeek 2023 in Boston.
• “Landscape Analysis to Identify Effective Drug Repurposing Candidates for the Treatment of Implantation Mycoses: Comparison of World Health Organization Survey Treatment Data” Authors: Reema Charles, MBBS, MS, Barbara Milani, Daniel Argaw Dagne, Bisma Ali, Heather Stone, MPH, Marco Schito, Raghavendra Tirupathi, MBBS, MD, and Nalini Oliver at IDWeek 2023 in Boston
• “Case Reports on CURE ID, and The Lesser Known Treponemal Infections: A Review of Non-Syphilitic Cases”Authors: Ashima Gupta, MBBS, Saarthak Malhotra, MBBS, Aasa Deepika Kuditipudi, MBBS, Reema Charles, MBBS, MS, Tahsin Farid, MD MPH, Raghavendra Tirupathi, MBBS, MD, and Barath Prashanth Sivasubramanian, M.B.B.S at IDWeek 2023 in Boston.
• “From OMOP to CDISC SDTM: Successes, Challenges, and Future Opportunities of Using EHR Data for Drug Repurposing in COVID-19” Authors: Wesley Anderson, Ruth Kurtycz, Tahsin Farid, Shermarke Hassan, Kalynn Kennon, Pam Dasher, Danielle Boyce, Will Roddy, Smith F. Heavner at OHDSI Global Symposium, 2023 New Jersey.
• “Developing an End-to-End Data and Analytics Pipeline Using AWS Resources and Natural Language Processing to Support the Analysis of Repurposed Drugs” Authors: Wesley Anderson, Roopal Bhatnagar, Smith Heavner, Marco Schito, Shu Chin Ma, Klaus Romero, Jagdeep Podichetty at ACoP 14 in Maryland.

• Rare Disease Day Impact Story: “Drug Repurposing Provides Big Impact for Patients and social media posts on publications https://c-path.org/impact_story/drug-repurposing-provides-big-impact-for-patients/
• The CDRC co-Chair, Dr. David Fajgenbaum, Keynote address is on C-Path’s YouTube channel and can be accessed here.
• The CDRC Annual Meeting Q&A interviews are officially posted on C-path’s YouTube channel and can be accessed from the CDRC website.
• Smith Heavner, PhD, RN’s podcast episode on AACN’s leadership podcast. Leading Research and Impacting Patient Outcomes (blubrry.com).
• SCCM’s Critical Connections Newsmagazine features Smith Heavner on page 18, “REDISCOVER-ICU”. The article talks about utilizing data to study drug repurposing beyond Covid-19 Critical Connections Summer 2023 by SCCM – Flipsnack.
• In Honor of #JulySarcomaAwarenessMonth, CDRC wrote an Impact Story titled “By Bringing Patients’ Voices to the Forefront, Sarcoma Advocates Illustrate Community’s Innovative Impact” surrounding two dedicated partners, Denise Reinke and Lisa De Young. By Bringing Patients’ Voices to the Forefront, Sarcoma Advocates Illustrate Community’s Innovative Impact | Critical Path Institute (c-path.org).
• In this podcast episode, listen to Ms. Heather Stone, FDA’s health science policy analyst in the FDA’s Office of Medical Policy, and Dr. Marco Schito, Executive Director of the Critical Path Institute’s CURE Drug Repurposing Collaboratory (CDRC) discuss CURE ID and the exciting plans to expand the tool beyond infectious diseases. CURE ID can be found online at https://cure.ncats.io or it can be downloaded from the App or Play store as “CURE ID”. Listen to the podcast here: https://lnkd.in/gFrA2VFT
• Completed a Clinical Scholars Program with 8 CURE ID Clinical Scholars, second round of Clinical Scholars will begin in January 2024.
• Developed outreach materials, partnerships, and tools to engage patients for sarcoma projects that were IRB approved posted on the Patient Center.

• Smith Heavner attended and presented “Leveraging the SCCM Discovery VIRUS COVID-19 Registry to Evaluate Drug Repurposing Research Dataset” at SCCM Annual meeting in San Francisco, CA January 20-24, 2023. Also successfully identified 16 additional sites to implement the Edge Tool in EHRs for the project.
• CDRC Annual Meeting. April 18th – 20th, 2023 in Washington, D.C. Presentations from the Annual Meeting can be found on the CDRC Website along with speaker bios, and a detailed agenda. CDRC |
• Marco Schito presented “US and UK government responses to the challenges” at the CeBIL symposium Sustainable health innovation, grand challenges & the law June 14th- 15th, COPENHAGEN
• Heather Stone spoke on “CURE ID: The Potential to Identify Treatments for Rare Disease Through Drug Repurposing” at the Rare & Orphan Disease Conference. September 11, 2023 Washington, D.C.
• Marco Schito presented virtually on “Repurposing and better use of clinical data”. Organized by the Spanish regulatory agency AEMPS on the 27th of September in Madrid, Spain regarding the funding challenges in drug repurposing as part of the MERIT regulatory working group.
• Heather Stone participated as a panelist in panel “The Potential Impact on Drug Repurposing” at the NORD Rare Disease & Orphan Products Breakthrough Summit, Washington, DC. October 15-17, 2023.
• Smith Heavner, presented on “Collecting and Leveraging Real- World Data” at the. The Health Research Alliance (HRA) Members Meeting, in Chicago, IL. October 16-17, 2023..
• Keyla Tumas presented “Real-world data for repurposed drugs to treat implantation mycoses” at the Symposium: Neglected Implantation Mycoses: getting out from under the skin. 21st INFOCUS annual meeting for The Latin American Forum of Fungal Infections in Clinical Practice. Nov 16, Iguazu Falls, Brazil.

• RASNet (RASopathies Network) conference July 21-23, 2023, Denver, CO. Aligned with patient advocates, met rare disease clinicians, researchers, patients, and industry members.
• Sarcoma Alliance for Research through Collaboration (SARC) Semi-annual meeting. June 2nd, 2023, Chicago, IL Leading into the annual meeting of the American Society of Clinical Oncology (ASCO).
• ASCO June 2- 6, 2023, Chicago, IL- a unique and unparalleled opportunity to connect with one of the largest, most diverse audiences in global cancer care.
• Drug Information Association (DIA) 2023 Global Annual Meeting June 25-29, 2023, Boston, MA. The DIA 2023 Global Annual Meeting invited industry, regulatory government, academics, and patients to network, problem-solve, and discuss global and local challenges facing the life sciences community.
• Critical Care Datathon August 5th and 6th, New York. The Society of Critical Care Medicine’s (SCCM) Datathon is a collaborative event connecting clinicians with data scientists to develop pragmatic data-driven models applicable to the care of critically ill patients using de-identified critical care electronic health record datasets.
• Dysautonomia International (DI) Conference July 14th and 15th in Washington, D.C. Connect with clinicians, patients, and care partners in the Long COVID community about CDRC and CURE ID work aimed at collecting data on use of drug repurposing in managing symptoms.
• Data-Driven Drug Repurposing Workshop: Unlocking disease biology and advancing systematic approaches, October 2-4, Redwood City, CA. Hosted by the Chan Zuckerberg Initiative, this workshop brought key actors who are advancing data-driven approaches for drug repurposing.\
• IDWeek October 11 -15, 2023 in Boston, MA. ID Week is the joint annual meeting of the Infectious Diseases Society of America (IDSA), Society for Healthcare Epidemiology of America (SHEA), the HIV Medicine Association (HIVMA), the Pediatric Infectious Diseases Society (PIDS), and the Society of Infectious Diseases Pharmacists (SIDP).
• ASTMH on October 18 – 22, 2023. American Society of Tropical Medicine and Hygiene (ASTMH) Annual Meeting was attended in Chicago, IL.
• CTOS, The Connective Tissue Oncology Society Annual Meeting, from November 1st – 4th in Dublin, Ireland. Met with patient advocates, met oncology clinicians, researchers, patients, and industry members.
• the BIONJ Patient Advocacy Summit on November 16th in Lawrenceville, NJ. This one-day summit was to educate, engage, and empower the patient advocacy community.