NKH UK/EU Community Register

This register will help connect our community. By taking part, you can help researchers learn more about NKH and hear about opportunities to get involved in NKH research and clinical trials.

This is a global register and is for anyone with a Glycine Encephalopathy/Nonketotic Hyperglycinemia (NKH) diagnosis.

NKH UK/EU Community Register

This register will help connect our community. By taking part, you can help researchers learn more about NKH and hear about opportunities to get involved in NKH research and clinical trials.

This is a global register and is for anyone with a Glycine Encephalopathy/Nonketotic Hyperglycinemia (NKH) diagnosis.

NKH Community Register

The NKH Community Register is a register – a list – of people diagnosed with NKH.

It includes who you (or your child) is, where you live, and about your NKH diagnosis. This register is a way to helps us understand more about the NKH community and, if you choose, to be contacted about potentially relevant research opportunities (such as clinical trials) and community activities, support and services.

This register is for anyone with a diagnosis of NKH, no matter where you are, how old you are, or what gene your NKH variant is in. We also welcome parents with children with NKH who have died to include their child, if you would like to.

By joining the NKH Community Register, you can help us learn more about our NKH community. We can:

Keep people informed about future opportunities to take part in NKH clinical trials, research and studies
Find out who we are and where we are, so we can best help support one another
Understand how NKH affects different people and their families
Share anonymised data that may help researchers better understand the impact of NKH on people’s lives.

Join the NKH Community Register

Note: If you are based in the USA, you are welcome to join this register. We also
strongly recommend you sign up to the Citizen Health initiative with NKH Crusaders.

NKH Community Register Privacy Notice and Terms and Conditions

NKH Community Register FAQ’s

What is the NKH Community Register?

The NKH Community Register is a way for families impacted by NKH to be counted and seen. It helps us understand more about the NKH community (who has it, where you are, what NKH gene your variant is in) and, where you choose, contact you about potentially relevant research opportunities and community activities, support and services. The Register is not a medical or clinical record

Why should I join? What is the benefit?

Joining the Register helps us keep in touch with people and families affected by NKH. If you choose to receive research-related contact, we may contact you about clinical or non-clinical research studies that might be relevant to you or your family.

If you agree to service improvement, your information can help us understand where people affected by NKH are located and plan community events, educational activities, support programmes and improvements to what we do. Joining does not guarantee that you will receive a particular service, invitation or research opportunity.

Is joining voluntary?

Yes. Joining the Register is completely voluntary. You can choose whether or not to join, and you can choose separately whether you agree to research contact and service improvement. Choosing not to join will not affect any healthcare, support or services you receive.

Who can join?

You can complete the Register form if you, or a person you support has a diagnosis of Nonketotic Hyperglycinemia (NKH) or Glycine Encephalopathy.

If you complete the form on behalf of someone else, please make sure that you are allowed to share their information with us. A parent or legal guardian can complete the Register for a child under 16.

Can I register my child?

Yes. A parent or legal guardian can complete the Register for a child under 16.
As a child grows older and becomes able to understand and make decisions about their own information, we encourage you to involve them. They can contact us directly about their information at any time.

If you child has died, you are still welcome to register them. Some studies are retrospectives, and your child’s story may be able to contribute to wider knowledge about NKH.

Do I need a confirmed diagnosis of NKH to join?

The Register asks whether the patient has been diagnosed with NKH by a healthcare professional and whether an NKH variant has been identified.
The diagnosis information you provide is self-reported. We do not independently verify it (this will happen within a study, if need be).
If you are unsure how to answer a question on the form, please contact us.

Is the Register a medical or clinical record?

No. The information in the Register is self-reported and is not independently verified at this point. The Register does not replace your medical records and is not used to provide medical diagnosis, treatment or advice.

If you are invited to join a clinical trial, or research study, your information will be verified within the study.

What information do you collect?

Depending on who the form is about, we may collect:
– your name and email address;
– the patient’s name;
– the patient’s country of residence and postcode;
– the patient’s year of birth;
– the patient’s gender;
– whether the patient is still living and, if not, when they passed away; and
– information about whether NKH has been diagnosed by a healthcare professional and whether an NKH variant has been identified.

More information about what we collect and why is provided in our Privacy Notice.

Will joining the Community Register put me or my child on a research study?

No. The Community Register does not automatically enrol you in a research study. If you choose to receive communications about future research opportunities, we may contact you about clinical or non-clinical research studies that might be relevant to you or your family. If you are interested in a particular study, you will receive separate information about it and will make a separate decision about whether to take part.

Do I have to take part in research if you contact me?

No. Being contacted about a research study does not mean that you have to take part.
You can decide for yourself whether you are interested. Any consent required to participate in a research study will be obtained separately

Can people outside the UK join?

Yes. The Register is open to people in different countries. Because of this, your information may be handled in or transferred to a country outside the UK. Where this happens, we will use appropriate safeguards as required by UK data protection law.