ANCHOR

(ASSEMBLY OF NCCS CANCER DATA FOR POPULATION HEALTH AND OUTCOMES USING REAL-WORLD EVIDENCE)

ANCHOR is an observational and real-word evidence study to advance the understanding of cancer and delivery of cancer care. Adopting a population health research approach, ANCHOR uses comprehensive data that describes the experience of cancer patients accurately to understand the cancer journey’s impact on patients. We will be collecting clinical data of patients of National Cancer Centre Singapore as they receive care in National Centers, SingHealth polyclinics, Singapore General Hospital (SGH), Sengkang General Hospital (SKH), KK Women’s and Children’s Hospital (KKH) and Changi General Hospital (CGH). The study will be conducted for a period of 30 years (2010-2040).

Frequently Asked Questions

Choosing to participate in research is a very important decision. The following information aims to help you understand the issues surrounding research and perhaps address some concerns relating to participating in research. It is often helpful to talk to a doctor, family members, or friends about deciding to join a research study.

Why is ANCHOR research important? What is the goal of the study?

The ANCHOR research study is important as it allows the collection, compiling, and selection of quality data to support evidence-based identification and generation of:

Population health descriptions, care indicators and healthcare utilisation
Comparative effectiveness studies
Population health models
Molecular biology and biomarkers
Epidemiological linkage
Synthetic controls

Who can participate in ANCHOR research study?

Patients who have been referred to National Cancer Centre for clinical care include those with histologically or cytologically confirmed diagnosis of malignancy or suspected of having cancer with pre-neoplastic lesions, or at risk of having cancer will be recruited for this study.
What happens if you agree to take part in ANCHOR study?

If you agree to take part in this study, your clinical data will be stored securely in our research database in NCCS till 2040. You will not be required to make extra visits to NCCS, nor will you be charged extra for your participation.

This is a one-time consent for your permission on clinical information and specimen at the beginning of the study after which we will not contact you.
There will be no samples requested from you, for the sole purpose of research, as you undergo your routine clinical care. During your routine care, if there are specimens removed (e.g., tissue or tumours during surgery and archived tissue), they may be retrieved for research purposes. However, no additional samples will be taken solely for research purposes.
There will be no intervention done for research. None of the research will affect your clinical care as participants information are de-identified, so individually directed intervention is impossible. Your clinical care is unaffected by your participation or non-participation in this study.

How will my privacy be protected? Will my information be confidential?

To protect your confidentiality, a unique code number will be used to identify data and/ biological material that we collected from you. Clinical information will be collected from participant’s medical records (paper or electronic) and stored in a secure database maintained by Data and Computational Science Core (DCS) team. We believe the chance of data breach and misuse is very low. In the event of a data breach, you will be notified if it is:

a. Likely to result in significant harm or impact to you; or

b. Of a significant scale

The informed consent form is one of the most important pieces of a research that protects patients. When you agree to participate in the ANCHOR study, you sign a form outlining all relevant details and privacy aspects about the study. Also, the SingHealth Institutional Review Board (IRB) has assessed ANCHOR’s protocol to ensure it is ethical and that patient rights are protected.
What is informed consent?

Informed consent is the process in which the researcher provides adequate information to a potential participant to assist him or her in making an informed decision on whether to participate in the study. The participant is provided with an informed consent form with details about the study such as its purpose, duration, required procedures, potential risks, and potential benefits. The participant is given the time to think carefully about the study and the opportunity to ask questions before making a decision. Informed consent is not a binding contract, and the participant may withdraw from participating in the research at any time.
Will I benefit from participating in ANCHOR study?

Your participation will help the advancement of medical sciences for future cancer patients. There is no direct benefit from participation in this study and do not affect your current or future clinical care.
What are the possible risks of participating in ANCHOR study?

There is no risk/discomfort/inconvenience involved as the human biological material is obtained from your previous biopsy or surgery procedure and archived in the hospital.
Do I have rights as a volunteer research participant of ANCHOR study?

Yes, your participation in this study is entirely voluntary. You have the following rights as a research participant:

To be treated with respect, including respect for your decision whether you wish to enroll in, continue in, or stop being in a study.
To choose to withdraw your consent and discontinue your participation in the study at any time, without your medical care being affected. It will also not affect your participation in other research studies that you have previously or are currently participating in.
To be given time to read the consent form and have the research study explained to you
You have a right to ask questions, which the study team will do their best to answer clearly and to your satisfaction.
In the event of any new information becoming available that maybe relevant to your willingness to continue in this study, you (or your legal representative, if relevant) will be informed in a timely manner by the Principal Investigator or his/her representative and will be contacted for future consent if required.
In the event of changes to the development of your capacity to make decisions (i.e., when you reach the age of 21 years old), you will be contacted for further consent.
To be given a copy of consent form after you have signed it.

I am participating / enrolled in another clinical research study. Do I still need to sign on this consent?

Yes, with your consent, we are then able to link your clinical information from the ANCHOR dataset with research data (and specimens) from research studies that you have previously participated in or are currently participating in.
How can I get more information on the study and research participation?

If you have any questions or concerns about your rights as a research participant, you are welcome to contact our research coordinators, Jeslin at (65) 6306 5522 or Sam at (65) 6306 5523. We are happy to help!