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Frequently asked questions

Answers to the most commonly asked questions about YHHN

Why have I been sent a letter?

In Yorkshire and Humberside all blood cancers and related disorders are diagnosed at the Haematological Malignancy Diagnostic Service (HMDS), a specialist laboratory at St James’s Hospital in Leeds.  Diagnostic samples are sent to HMDS by the doctors and nurses who provide care.  Following diagnosis, we write to patients (with permission of their hospital team), and invite them to take part in our study.

Do I need to travel to York to take part in the study?

No, you don't.  To take part, all you need to do is complete the consent form in the study pack sent to you and return it in the Freepost envelope provided. You can as us to send you a questionnaire to complete, but again, this will be sent to you in the post, so you do not need to travel anywhere.

Do I need to give more blood samples?

No, you don’t.  Any blood we receive is left over from routine tests carried out when your condition was first diagnosed, so you do not need to give any more.

What happens to my blood?

Blood samples will only be used in research studies, and never in a way that could lead to identification.  Cells and DNA from samples will be stored and analysed so we can investigate the differences between people who develop blood cancers and related disorders, and those who do not.

I feel too ill to participate - what should I do?

It is understandable that you may feel unable to consent while you are having treatment.  If this is the case, but you feel you do want to take part, you can complete the consent form and return it to us when you feel better.  If you misplace your study pack, you can contact us and ask for a replacement.

I've lost part of my study information pack - what should I do?

If you have lost part (or all) of your study pack, please contact us to request a replacement.  Alternatively, copies of all study information and documents can be downloaded from the YHHN study paperwork page.

How much of my medical history do you want?

You do not need to give us details of all your medical history. We are looking for more general information, including any serious illnesses you may have, or have had in the past (e.g. diabetes, heart disease, cancers).  Also, if there is anything else you feel is important that you would like to tell us, please write this on the back page of your questionnaire.

I can't remember precise dates when filling in the questionnaire - what should I do?

Don't worry, please tell us as much as you can (e.g. the approximate month and year).

What data do you link to?

We link to NHS Digital to obtain information about patients’ medical conditions and the care they receive.  To do this we send each patient’s surname, forename, sex, date of birth and NHS number, along with their YHHN study number to NHS Digital, who then link to various datasets to provide us with information about illnesses, hospital care, cancers that are unrelated to the blood disorder, and death registration (where applicable).  This information comes from Hospital Episode Statistics (HES), the Office for National Statistics and Cancer Registries. More information on how these data are processed is provided here.

How long will you store my data for?

YHHN is a long-term project and we currently have ethical approval to continue until September 2024.  The information collected from medical records about diagnosis and treatment is part of each patient’s clinical care; it is held within the NHS and retained with the individual’s records.  At the end of the study, all data will be disposed of securely and in accordance with applicable regulations.  As YHHN is ongoing, and further study approvals will be requested in the future, it currently has no planned end-date.

How can I withdraw my consent?

You can withdraw from any of our projects, at any time, without giving a reason.  If you wish to do this, please contact us.  Any information and/or samples you have given will be destroyed.

What is the Haematological Malignancy Research Network (HMRN)?

YHHN is also known as the Haematological Malignancy Research Network (HMRN), which is the name use when we publish our findings.  You can visit the HMRN website for information and statistics about blood cancers and related disorders, and details of our study findings.

How is YHHN funded?

YHHN is largely funded by Cancer Research UK and Blood Cancer UK. Specific research projects, building on YHHN core data, are funded by individual organisations. Pharmaceutical companies occasionally part-fund specific clinical audits (data analysis and report preparation), but do not influence study methods, findings, or publications.