A new research study in aplastic anaemia – we need your input again!

We want to tell you about a new research study King’s College Hospital (KCH) are starting to work on, which would involve all new patients with aplastic anaemia (AA) in England. KCH want to apply to the main NHS research funding body, firstly to collect key information over a 2-3 year period on how many people present each year with AA. It may surprise you to know that we do not know how many people currently have AA in this country! They also want to get accurate data on how many patients might have an inherited AA. In addition, they want to know exactly how many patients are receiving different treatments for AA, whether with ATG or other drugs and how many are not requiring treatment.

As for other clinical and research studies, the involvement of patients and the public in helping with setting up new studies and the running of new studies is a big priority to the NHS research funding bodies. King’s would therefore like to invite you again, as they have done with their recent studies, to contact them if you would like to help them with this. They are seeking volunteers, that is, patients or family members, loved ones, and friends, who would like to form part of a ‘focus group’ to work with them on this. This would involve giving King’s your feedback either online or at a group meeting when they will present the study details to you, and then for your further feedback and comments a couple of times a year while the study is running.

If you are interested in being involved in helping King’s to set up this trial, please do contact them direct (see contact details below).

Contact details

  1. Prof Judith Marsh, King’s College Hospital, tel: 0203-299-3080/3709; judith.marsh@nhs.net
  2. Nana Benson-Quarm, AAT Clinical Nurse Specialist, King’s College Hospital, tel: 0203-299-7663; nana.benson-quarm@nhs.net