国立研究開発法人 国立成育医療研究センター National Center for Child Health and Development

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国立成育医療研究センターについて About National Center for Child Health and Development

国立成育医療研究センターについて About National Center for Child Health and Development

BioBank:For Participants

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Greetings from head of the NCCHD BioBank

We aim to elucidate the causes of incurable diseases and clinical conditions to develop new treatments and medicine. Therefore, we need to collect and register donated samples and clinical information from patients for use in future research. We hope that you are interested in our mission and would like to participate in our work.


Yoichi Matsubara, M.D.
Head of the NCCHD BioBank

How the NCCHD BioBank system works

  • donationdonationWe receive bio-resources and medical information from patients after they have lodged their written agreement to donate.
  • bank bankWe anonymize bio-resources and medical information before storing them in the NCCHD BioBank.
  • lab labDonated bio-resources and information from our BioBank are used in medical research.
  • good health good healthOur research findings help to develop new medicine and treatments to target diseases.

Flow of participation

If you would like to participate in our work by donating your bio-resources, such as a blood sample, or sharing your medical information with us, first talk about your intention to donate with a doctor at the NCCHD.

  • 1

    A specialist at the NCCHD will then give you further information on making a donation and how it will be used by the BioBank.

  • 2

    All participants must sign a consent form.

  • 3

    You will need to answer questions about your lifestyle habits and medical history.

  • 4

    Your blood sample will be collected and checked.

  • 5

    We will securely store bio-resources (such as blood samples) and information (such as medical records) in our BioBank. All samples and information are stored anonymously.

  • 6

    We supply our bio-resources and medical information to researchers undertaking studies approved by the Ethics Review Board of the NCCHD.

FAQ

Personal free will and privacy

Q1Is it possible to cancel an agreement to participate?
AYes, it is possible to cancel the agreement at anytime. However, when data has already been analyzed and included in an academic paper, it is not possible to omit your sample from the data.
Q2Is my personal information protected?
AWe scrupulously handle samples and information about medical examinations and treatment at the BioBank, and all personal information is protected. When your sample and other data are registered at our BioBank, all identifiable information is anonymized, that is, your name and patient number are removed and replaced with an unrelated symbol and number. Once the data is anonymized, it is then stored in our BioBank and ready for use in research.

Blood samples and medical information

Q3How is my blood sample or medical information used?
ASamples and medical information are used for research after we receive permission from our center’s Ethics Review Board. It is possible that samples will be used in research conducted outside of our center by local or international universities, medical enterprises or medical device manufacturers. Such research endeavors will play an important role in advancing new treatments and developing new medicine in the future.

Research results

Q4Is it possible to know what kinds of study were conducted?
AWe will publish information about our studies on our website.
Q5Do my family or I have any rights over the study results?
ADepending on the research, some results may involve intellectual property rights relating to the study outcome. However, in such cases those rights do not belong to you as the donor, or your family.

If you have further inquiries about donating bio-resources or contributing medical information to our BioBank, please contact the NCCHD BioBank representative below.

NCCHD BioBank contact information

03-3416-0181 (Representative)

Weekdays 10:00-16:00