Centre for Human Metabolomics Biobank

CHM Biobank Information

Please look at this information carefully. If you don’t understand something or have any questions, you are welcome to contact us. We’re happy to help.

What is a Biobank?

A biobank is like a special bank, but instead of money, it keeps medical samples like small amounts of your blood or urine. It also keeps important information about your health. Scientists and doctors can use this to learn more about different conditions and how to help people feel better. By participating, you are helping to make things better for others in future.

Who is Invited?

  • People who have a rare metabolic condition, which is a special kind of condition that affects how their body uses food and energy.
  • Someone related to a person with that special condition, like a mom, dad, brother, or sister.
  • People without a rare condition can also share samples, to help scientists compare and see how things are different for people with/without the condition.

Your Participation

We are asking if it’s okay with you/your child to share samples (of blood or urine) and information with us to help us learn more about rare metabolic conditions. If you agree to share – the samples will be stored in a special place called the Centre for Human Metabolomics (CHM) Biobank. Scientists will use the samples and information to find better ways to help people who are sick. By saying yes, you’re helping researchers understand more and make things better for others in future.

Ethics and Approval

We have special approval from a group of experts who make sure that everything is safe and fair while taking and storing samples and information. This group is called the NorthWest University Human Research Ethics Committee (NWU-HREC). They ensure the CHM Biobank doesn’t hurt anyone. The CHM Biobank also follows important rules that are used all around the world to keep everything safe and right. The ethics approval number for the biobank is NWU-BB001-19-A1

Your Rights

  • You don’t have to join the Biobank and share your samples if you don’t want to. It’s up to you.
  • You can say “no” and nothing bad will happen
  • If you say “yes” but later change your mind, that’s okay too, and nothing bad will happen.
  • You can also ask as many questions as you want, and we’ll help you understand.

Research Usage

When you share your samples and information, they are used by researchers to learn about special health problems; some of these are conditions are very rare and affect how the body breaks down food into energy for our body to use. Once your sample and information are included in the Biobank, if a researcher wants to use the samples, they must first get ethics approval. The ethics committee at the researcher’s institution checks the researcher’s plan first to make sure it’s okay and to ensure that researchers are doing things the right way. Once the researcher has ethics approval, they ask the Biobank for permission to use specific data and samples. The Biobank will assign a unique code to your samples and data to make sure that your name and personal information is kept safe.

What Do We Ask From You?

If you choose to participate, you will be asked to:

  • Sign a form:
    You will sign a form saying you want to join the Biobank.
  • Give information: Share your health status and family history of health problems.
  • Give samples: You give a little bit of blood and urine to store in the Biobank.
  • Keep us updated:
    If anything changes with your health or treatment, let us know.
  • Join future studies:
    You can also help with other research in the future if you want to.

Types of Samples Stored In The Biobank

  • Urine – “Whee-whee”
  • Serum – “Fluid part of blood”
  • Plasma – “Fluid & protein part of blood”
  • Blood cards – “a drop of blood from a finger-prick on a special card“
  • Whole blood – “a small amount (a teaspoon or two) of your blood“
  • Cerebrospinal fluid – “Clear liquid that surrounds your brain and spinal cord”
  • Fibroblasts – “Special cells that help wounds heal and keep tissues strong”
  • Muscle/tissue biospy material – “A small piece of muscle or tissue”
  • Isolated DNA/RNA – “These carry the instruction that tell the body how to grow and work”
  • Cells an/or cell cultures – “Tiny building blocks that make up all parts of the body – which can be kept and grown in the laboratory”

Information stored in the Biobank

  • Biological Information – “Details about samples from your body”
  • Genetic Information – “Details about your DNA or genes, which carry instructions that affect how your body works”
  • Demographic Information – “Basic background details about you, such as age, sex, ethnicity, or where you live”
  • Clinical Information – “Information such as your health history, test results, diagnoses, or treatments”
  • Relevant Family History – “Health information about close relatives (such as parents or sibilings) that may help understand family health conidtions”

Potential risk

Joining the Biobank is safe, but sometimes you might feel or see these things:

  • Bleeding: A little bit of blood might come out from where the needle goes in.
  • Bruising: You may get a blue or purple bruise later, like when you bump into something.
  • Dizziness: You might feel a little dizzy or feel the room is spinning for a short time.
  • Discomfort: You may feel a little uncomfortable or shy during the process, but it is only for a moment.

Don’t worry – these things usually go away quickly.

Potential Benefits

By joining the Biobank, you’re helping scientists learn more about rare conditions, which can improve future treatments. It’s important to know that these new treatments are not immediate. It may take many years for the research to help doctors find new ways to treat or understand these conditions. But by joining the Biobank you’re doing something really important to help others.

Access To Your Information

The people who collect your samples are trained to do it carefully and safely, in a clean and safe place. Only the people who work at the CHM Biobank can see your information, and they are all experts who follow important rules to make sure everything is done correctly

Privacy & Confidentiality

All your information, including your health details, is kept private and safe with a special password. Instead of using your name, we use a barcode number to keep your identity secret. If researchers need to look at the information, they cannot see who you are. Only one person, called the Custodian, can match your samples to your name. This helps keep everything safe and private.

Storage of Findings and Samples

Your information is kept safe in two ways:

  1. Paper copies are kept in a locked location by a trusted service to keep them safe.
  2. Computer data is protected by special passwords, and only those allowed to see the information know the password.

Your samples are also stored in a special freezers to keep them in good condition over a long period, at the CHM at North-West University in Potchefstroom, South Africa. If you decide you don’t want to be part of the Biobank anymore, you can change your mind, and your information will be taken away and samples destroyed.

Sending Samples Overseas

Sometimes, your samples may be sent to other countries for international research. But it’s up to you whether you want to allow that to happen. You can choose to say yes or no

Results Communication & Publication

Researchers that make use of your samples and data will publish their findings in academic journals. A list of these publications will be shared on the website. The purpose of research is not only to discover new knowledge but also to share it in ways that benefit individuals, communities, and society. Results of the research will be presented as group data or as a case study but will not include any identifiable information – so no one will know the research used your samples or information. You will have the option to choose what information you want to be made public. Results will be published in scientific papers and reports and made available on the Biobank website.

Support

If research findings could affect your health, a qualified professional will inform you immediately. Potential genetic testing may include discovering other health risks or family-related information. The Biobank will cover consultations and provide support if necessary.

Closure of CHM Biobank

If the Biobank closes in the future, samples will be transferred to another approved Biobank. If this transfer isn’t possible or if you choose not to transfer, your samples and information will be destroyed following legal protocols.

Frequently asked questions

Contact Information

If you have any questions or concerns, please reach out to the following individuals:

  • Principal Investigator:
  • Prof. Chris Vorster
  • Phone: 018 299 4196
  • Principal Investigator and Biobank Custodian:

North-West University Human Research Ethics Committee (NWU-HREC):

  • Mrs. Carolien van Zyl
  • Phone: 018 299 1206
  • Email: carolien.vanzyl@nwu.ac.za

For any inquiries that were not addressed in this document, or if you have any complaints regarding the research, please do not hesitate to contact the NWU-HREC.

CHM Biobank Comic Book

Speaking books

Biobank Speaking books, developed by the South African National Bioinformatics Institute (SANBI), University of Western Cape.

Xhosa - Youtube Video

English - Youtube Video

Afrikaans - Youtube Video

CHM Biobank Form

If you wish to take part in the CHM Biobank, you will be asked to give broad consent. This means that you allow your samples and information to be used in different future research, but the research will always be approved by a research ethics committee (refer to “research usage“)

Consent to contact

Name *
Surname *
Referring doctor (if applicable)
Phone number *
Alternative phone number of family member or friend *
Email *
Preferred method of communication: *
Consent *

Consenting

Are you an adult with a rare condition or a parent/legal guardian of person with rare condition? *
What is the age of the person with the rare condition? *
 What is the ability of the person with the rare condition? *
Do you want to participate in the Biobank as well? *

Adult consent for participants - Form A

Surname *
First Name *
Date of Birth *
Gender *
Email *
Initials: *
Age *
Condition *
Phone number: *
Preferred method of contact: *
Contact information of 2 family members or friends not living with you
Name and surname: *
Phone nr *
Relationship *
Email address: *
Name and surname: *
Phone nr *
Relationship *
Email address: *
Consent Checklist
The Biobank has been clearly explained to me *

I am aware that I have an opportunity to be contacted by a representative to explain it to me if something is unclear *
I was allowed to ask questions, and all my questions were answered. *
I know that joining the Biobank is my choice, no one forced me to take part. *
I understand the risks and possible benefits of being part of the Biobank *
I know I won’t be paid for being part of the Biobank. *
I understand that I can leave the Biobank at any time, and no one will treat me badly if I do. *
I know that only approved researchers (or if the law requires it) can access my information and samples, and they must first get permission from an ethics committee and the Biobank. *
My samples and information can be stored at the CHM (NWU). *
My samples and information can be used for different research projects and case studies that have been approved by an ethics committee and the Biobank. *
I give permission for my samples to be sent to other countries if needed for research. *
I understand that the general results of the study will be shared through scientific publications, the Biobank’s website and social media. *
I want my name to be used in scientific publications. *
Please specify the name to be used if you indicated “YES” in the previous question: *
The Biobank may contact me later to update my information or ask for more samples. *
My family may be asked if they also want to join the CHM Biobank *
I agree to give biomedical samples for storage and research (urine, serum, plasma, blood cards, whole blood, cerebrospinal fluid, fibroblasts, muscle biopsy material, tissue biopsy material, isolated DNA/RNA, cells and/or cell cultures, biological information, genetic information, demographic information, clinical information, relevant family history). *
There are samples that I want to exclude from storage and research *
Please specify types of samples to exclude if you indicated “YES” in the previous questions *
I give consent to the researchers to use my other contributions in the following way:
Photos *
Video *
Audio *
Written *
My contribution (samples and information) can be used for (indicate below):
Information and photos may be shared inside the organization and with the public, for example at workshops, courses, conferences, or in newspapers, magazines, and other media. *
My information may be studied together with other people’s cases to find patterns. The goal of this is to write articles that help teach others and guide how professionals work. *
I agree that what I share can be used to support the learning and development goals of everyone collaborating on the Biobank. I understand that any videos, recordings, photos, or written pieces I give may be edited and added to the Biobank’s collection of teaching and learning materials *
Signed at *
Date Signed *
Parent/Legal guardian is illiterate *
Signature *
Clear
Witness Name *
Phone Number *
Witness Surname *
Witness Email Address *
Witness Relationship to the Participant *
Witness Signature *
Clear

Parental/Legal guardian permission and Child assent - Form B

Particulars of participant
Surname *
First Name *
Date of Birth *
Initials *
Age *
Gender *
Condition *
Referring Doctor *
Particulars of parents/legal guardian of participant
Capacity *
Surname *
First Name *
Date of Birth *
Initials *
Age *
Gender *
Email *
Cell number *
Preferred method of contact *
Capacity *
Surname *
First Name *
Date of Birth *
Initials *
Age *
Gender *
Email *
Cell number *
Preferred method of contact *
Contact information of 2 family members or friends not living with you
Name and surname: *
Phone nr *
Relationship *
Email address: *
Name and surname: *
Phone nr *
Relationship *
Email address: *
Consent Checklist
The Biobank has been clearly explained to me. *
I was allowed to ask questions, and all my questions were answered. *
I know that joining the Biobank is my choice, no one forced me to take part. *
I understand the risks and possible benefits of being part of the Biobank. *
I know I won’t be paid for being part of the Biobank. *
I understand that I can leave the Biobank at any time, and no one will treat me badly if I do. *
I know that only approved researchers (or if the law requires it) can access my information and samples, and they must first get permission from an ethics committee and the Biobank. *
My samples and information can be stored at the CHM (NWU). *
My samples and information can be used for different research projects and case studies that have been approved by an ethics committee and the Biobank. *
I give permission for my samples to be sent to other countries if needed for research. *
I understand that the general results of the study will be shared through scientific publications, the Biobank’s website and social media.
I want my name to be used in scientific publications. *
Please specify the name to be used if you indicated “YES” in the previous questions: *
The Biobank may contact me later to update my information or ask for more samples. *
My family may be asked if they also want to join the CHM Biobank. *
I agree to give biomedical samples for storage and research (urine, serum, plasma, blood cards, whole blood, cerebrospinal fluid, fibroblasts, muscle biopsy material, tissue biopsy material, isolated DNA/RNA, cells and/or cell cultures, biological information, genetic information, demographic information, clinical information, relevant family history). *
There are samples that I want to exclude from storage and research *
Please specify types of samples to exclude if you indicated “YES” in the previous questions: *
I give consent to the researchers to use my other contributions in the following way:
Photos *
Video *
Audio *
Written *
My contribution (samples and information) can be used for (indicate below):
Information and photos may be shared inside the organization and with the public, for example at workshops, courses, conferences, or in newspapers, magazines, and other media. *
My information may be studied together with other people’s cases to find patterns. The goal of this is to write articles that help teach others and guide how professionals work. *
I agree that what I share can be used to support the learning and development goals of everyone collaborating on the Biobank. I understand that any videos, recordings, photos, or written pieces I give may be edited and added to the Biobank’s collection of teaching and learning materials. *
Signed at *
Date signed *
Parent/Legal guardian is illiterate *
Signature *
Clear
Witness Name *
Phone Number *
Witness Surname *
Witness Email Address *
Witness Relationship to the Participant *
Witness Signature *
Clear

Parental/Legal guardian permission - Form C

Particulars of participant
Surname *
First Name *
Date of Birth *
Initials *
Age *
Gender *
Status *
Condition *
Referring Doctor *
Particulars of parents/legal guardian of participant
Capacity *
Surname *
First Name *
Date of Birth *
Initials *
Age *
Gender *
Email *
Cell number *
Preferred method of contact *
Capacity *
Surname *
First Name *
Date of Birth *
Initials *
Age *
Gender *
Email *
Cell number *
Preferred method of contact *
Contact information of 2 family members or friends not living with you
Name and surname: *
Phone nr *
Relationship *
Email address: *
Name and surname: *
Phone nr *
Relationship *
Email address: *
Consent Checklist
The Biobank has been clearly explained to me. *
I was allowed to ask questions, and all my questions were answered. *
I know that my child/dependent joining the Biobank is my choice, no one forced me to let my child/dependent take part. *
I understand the risks and possible benefits of my child/dependent being part of the Biobank. *
I know I won’t be paid for my child/dependent being part of the Biobank. *
I understand that my child/dependent can leave the Biobank at any time, and no one will treat us badly if we do. *
I know that only approved researchers (or if the law requires it) can access my child’s/dependent’s information and samples, and they must first get permission from an ethics committee and the Biobank. *
My child’s/dependent’s samples and information can be stored at the CHM (NWU). *
My child’s/dependent’s samples and information can be used for different research projects and case studies that have been approved by an ethics committee and the Biobank. *
I give permission for my child’s/dependent’s samples to be sent to other countries if needed for research. *
I understand that the general results of the study will be shared through scientific publications, the Biobank’s website and social media *
I want my child’s/dependent’s name to be used in scientific publications. *
Please specify the name to be used if you indicated “YES” in the previous questions: *
The Biobank may contact me later to update my child’s/dependent’s information or ask for more samples. *
My family may be asked if they also want to join the CHM Biobank. *
I agree to give biomedical samples of my child/dependent for storage and research (urine, serum, plasma, blood cards, whole blood, cerebrospinal fluid, fibroblasts, muscle biopsy material, tissue biopsy material, isolated DNA/RNA, cells and/or cell cultures, biological information, genetic information, demographic information, clinical information, relevant family history). *
There are samples of my child/dependent that I want to exclude from storage and research *
Please specify types of samples to exclude if you indicated “YES” in the previous questions: *
I give consent to the researchers to use my child’s/dependent’s other contributions in the following way:
Photos *
Video *
Audio *
Written *
My child’s/dependent’s contribution (samples and information) can be used for the following:
Information and photos may be shared inside the organization and with the public, for example at workshops, courses, conferences, or in newspapers, magazines, and other media *
My child’s/dependent’s information may be studied together with other people’s cases to find patterns. The goal of this is to write articles that help teach others and guide how professionals work. *
I agree that what my child/dependent shares can be used to support the learning and development goals of everyone collaborating on the Biobank. I understand that any videos, recordings, photos, or written pieces my child/dependent or myself give may be edited and added to the Biobank’s collection of teaching and learning materials. *
Signed at *
Date signed *
Parent/Legal guardian is illiterate *
Signature *
Clear
Witness Name *
Phone Number *
Witness Surname *
Witness Email Address *
Witness Relationship to the Participant *
Witness Signature *
Clear

Adult consent for family members - Form D

Particulars of participant
Surname *
First Name *
Date of Birth *
Initials *
Age *
Gender *
Email *
Cell number *
Preferred method of contact *
Contact information of 2 family members or friends not living with you
Name and surname: *
Phone nr *
Relationship *
Email address: *
Name and surname: *
Phone nr *
Relationship *
Email address: *
Consent Checklist
The Biobank has been clearly explained to me. *
I was allowed to ask questions, and all my questions were answered. *
I know that joining the Biobank is my choice, no one forced me to take part. *
I understand the risks and possible benefits of being part of the Biobank. *
I know I won’t be paid for being part of the Biobank. *
I understand that I can leave the Biobank at any time, and no one will treat me badly if I do. *
I know that only approved researchers (or if the law requires it) can access my information and samples, and they must first get permission from an ethics committee and the Biobank. *
My samples and information can be stored at the CHM (NWU). *
My samples and information can be used for different research projects and case studies that have been approved by an ethics committee and the Biobank. *
I give permission for my samples to be sent to other countries if needed for research. *
I understand that the general results of the study will be shared through scientific publications, the Biobank’s website and social media. *
I want my name to be used in scientific publications. *
Please specify the name to be used if you indicated “YES” in the previous questions: *
The Biobank may contact me later to update my information or ask for more samples. *
My family may be asked if they also want to join the CHM Biobank. *
I agree to give biomedical samples for storage and research (urine, serum, plasma, blood cards, whole blood, cerebrospinal fluid, fibroblasts, muscle biopsy material, tissue biopsy material, isolated DNA/RNA, cells and/or cell cultures, biological information, genetic information, demographic information, clinical information, relevant family history). *
There are samples that I want to exclude from storage and research *
Please specify types of samples to exclude if you indicated “YES” in the previous questions: *
I give consent to the researchers to use my other contributions in the following way:
Photos *
Video *
Audio *
Written *
My contribution (samples and information) can be used for (indicate below):
Information and photos may be shared inside the organization and with the public, for example at workshops, courses, conferences, or in newspapers, magazines, and other media. *
My information may be studied together with other people’s cases to find patterns. The goal of this is to write articles that help teach others and guide how professionals work. *
I agree that what I share can be used to support the learning and development goals of everyone collaborating on the Biobank. I understand that any videos, recordings, photos, or written pieces I give may be edited and added to the Biobank’s collection of teaching and learning materials. *
Signed at *
Date signed *
Parent/Legal guardian is illiterate *
Signature *
Clear
Witness Name *
Phone Number *
Witness Surname *
Witness Email Address *
Witness Relationship to the Participant *
Witness Signature *
Clear

accelRare® is a pre-diagnostic solution for rare diseases. accelRare® uses the medvir tool, certified as a Class I medical device, for which Medical Intelligence Service is the manufacturer and Sanofi the distributor.

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Provide clinical information

Clinical information may greatly assist in the interpretation of metabolic results and additional recommendations. The clinical information can be provided here

Print the test selection form from email and hand to the patient or phlebotomist for sample collection

[field id="reference_id"]
[field id="imdclinicalresult1"]

The National Metabolomics Platform is a specialized laboratory dedicated to diagnosing rare and inherited metabolic diseases. Located on the Potchefstroom campus of North-West University, the laboratory may occasionally require additional tests, including genetic testing, to confirm a diagnosis. If these tests incur additional costs, the laboratory will seek prior approval from you and/or your clinician. To ensure diagnostic accuracy, clinical information and other reports may also be requested. Such requests are made solely to enhance the precision of the diagnosis. Following a diagnosis, the laboratory may contact you about potential research projects for which you might be eligible. These projects aim to improve the understanding and characterization of rare diseases and offer patients opportunities to participate in international clinical trials. Participation in these projects is entirely voluntary, and there is no obligation to take part if contacted. All research is conducted under the oversight of the NWU Health Research Ethics Committee.

GCxGC-TOFMS Untargeted

  • Sample matrix (Volume needed):
  • Serum (100-200 uL)
  • Urine (1-2 mL)
  • Tissue (100 mg)
  • Other (Please consult)
  • Analytical Technique:
  • GCxGC-TOFMS
Enquire Now
Download pdf

Compound list

Spectra identified via comparison with library spectra

NMR Untargeted

  • Sample matrix (Volume needed):
  • Serum (1,5mL)
  • Urine (1-2mL)
  • CSF (150 - 200 uL)
  • Breastmilk (2-3 mL)
  • Tissue (100 mg)
  • Other (Please consult)
  • Analytical Technique:
  • NMR
Enquire Now
Download PDF

Compound list

Spectra identified via comparison with library spectra

LDL Cholesterol Subfractions

  • Sample matrix (Volume needed):
  • Fasting Serum (50 - 100 uL)

  • Price per sample (VAT incl):
  • R 900 (Client should provide total cholesterol value)
  • Analytical Technique:
  • Lipoprint - Gel Electrophoresis
Enquire Now
Download PDF

Compound list

The LDL subfraction test measures up to twelve lipoprotein fractions and subfractions (VLDL, mid-bands A-C and LDL 1 through 7)

HDL Cholesterol Subfractions

  • Sample matrix (Volume needed):
  • Fasting Serum (50 - 100 uL)

  • Price per sample (VAT incl):
  • R 900 (Client should provide total cholesterol value)
  • Analytical Technique:
  • Lipoprint - Gel Electrophoresis
Enquire Now
Download PDF

Compound list

Separates and quantifies up to 10 HDL subfractions, classified from large buoyant HDL lipoproteins (HDL-L) to small-dense HDL lipoproteins (HDL-S).