Caregiver/Patient Study: How HLH affects children and the people who look after them

Dear Caregiver,
​
Alacrita, an independent research company, are looking for people who care for children with HLH, and young adults (18-30 years inclusive) who have recovered from HLH, to take part in a short study to understand how HLH affects children and the people who look after them. We are contacting you as a subscriber of Liam’s Lighthouse Foundation.

If you contact Alacrita to let them know you are interested in taking part in this study, they will first arrange to speak to you by telephone you to ask a few questions to determine whether you are eligible. This is a standard step for all studies, as researchers want to recruit people with particular characteristics.

If you are eligible, the Alacrita research team will arrange a convenient time for you to take part in an interview with a trained interviewer. This can be by telephone or in-person, either at your home or at a mutually convenient place.

If you then agree to take part in the study, Alacrita will send you a letter confirming the date, time, and place of your interview by post or email, together with more detailed information about the study and a Background Questionnaire for you to complete before the interview.

During the interview you will be asked questions about your child with HLH and your experiences of caring for them.  The interview will take about an hour. You will receive a [$100/£75] voucher to cover any costs you incurred by taking part in the interview.
​
You are free to withdraw from the study at any point, and you do not have to give a reason. We do hope that you will take part, as your participation will contribute to vital understanding about patients and their parents/primary carers living with HLH. 

If you are interested in taking part, please contact the study research team by filling out the form below to send an email to the study team at: [email protected]

Dr Annabel Nixon
Principal Investigator