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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 disorders are diagnosed at the Haematological Malignancy Diagnostic Service (HMDS), a specialist laboratory based at St James’s Hospital in Leeds.  Diagnostic samples are sent to HMDS by the doctors and nurses who provide your care at the hospital.  When your blood disorder has been diagnosed we write to you (with permission of your hospital team), and invite you to take part in the 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 to the York research team in the prepaid envelope provided. You can request a questionnaire to complete later, 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.  As such, you do not need to give any more blood.


What happens to my blood?

Blood samples will only be used in research studies, and never in a way that could lead to your identification.  Cells and DNA from your sample will be stored and analysed so we can investigate the differences between people who develop blood 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 call our Freephone number 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 pack, please call our freephone number to request a replacement.  Alternatively, copies of all our study information documents can be downloaded from our 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.  It is often difficult to remember dates exactly.  In this situation, please tell us as much information 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, gender, 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 each patient’s 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 research project and we currently have ethical approval to continue until September 2019.  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, however, there is currently no planned end-date for this study.


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.