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A Resolution to Share Legacy Cancer Clinical Trial Data; a Right of Consented Patients

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Submitted by the Patient Advocate Committee of the Alliance for Clinical Trials in Oncology on the behalf of all patients who have participated in cancer clinical trials to improve treatments and outcomes for all cancer patients in the future. 

Sharing data is essential to bring together vast amounts of legacy cancer clinical trial data to advance medical discoveries. Discoveries made through collaborations and sharing data are discoveries that cannot be made using small isolated data sets.  Barriers to sharing data must be resolved so that all legacy NCTN clinical trial data can be shared in a way that benefits all patients.

Whereas, patients volunteer to participate in clinical trials for many reasons, including to help themselves, others, and to help improve treatments for future patients;

Whereas, patients who volunteer to participate in clinical trials;

  • are informed about potential benefits and risks, including the risk of the loss of confidentiality;
  • have signed an informed consent document indicating knowledge and acceptance of potential risks (including potential loss of confidentiality) and receive printed copies for future reference;
  • voluntarily donate their personal information, tissue, blood, and other biological samples for future research while participating in clinical trials;
  • expect that the samples and information they submit will be used to further understand and improve the treatment of future patients in a way that is concordant with current research practices;

Whereas, current technology permits data sharing to collect data from various clinical trials to gain better knowledge, understanding, and improve the treatment of future patients;

Whereas, patients acknowledge that loss of confidentiality, identification of individuals and misuse are potential risks of data sharing;

Whereas, data sharing projects (e.g., Project Data Sphere) take high security measures to ensure that there is minimal possibility of loss of confidentiality or misuse of data collected.

Therefore, be it

Resolved, that patients who participate in clinical trials are aware of the potential loss of confidentiality and signed an informed consent document acknowledging this as a possibility and,

Resolved, that patients who participate in clinical trials expect their samples and information to be used to benefit future patients. Not allowing data sharing in an open and transparent process could negatively affect the potential to discover new medical and scientific advancements translating to future patients’ treatment and,

Resolved, that sharing patient data collected in clinical trials is essential, and would be a disservice to patients not to use their data in the most productive and efficient way possible to advance treatments and preventive measures for future patients,

And be it finally

Resolved, that barriers of federal agencies and research institutions to restrict the sharing of clinical trial data should be immediately resolved, and full support granted to National Cancer Institute’s National Clinical Trials Network (NCTN) groups and other accredited cancer research organizations to allow and encourage sharing of legacy cancer clinical trial data.



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