Alira Health is researching the patient journey of Leucine-rich glioma-inactivated 1 antibody encephalitis (LGI1 AIE) patients by exploring the emotional and costs aspects of living with LGI1 AIE to inform broader understanding of the disease area.

Emotional aspects includes items such as the burden of the disease, difficulties living with LGI1 AIE, and effects on daily life.

Costs of LGI1 AIE to patients will encompass items such as costs of treatment, costs of getting a diagnosis, and effects of LGI1 AIE broadly from a financial perspective. Alira Health is seeking to interview patients in Germany, France, Spain, and Italy to understand to understand their unique perspective of living with LGI1 AIE.

Goals of the Study

  1. Describe the emotional and cost elements of the LGI1 AIE patient journey, including pre-diagnosis, diagnosis and post-diagnosis phases
  2. Qualify and quantify the burden of LGI1 AIE on patients
  3. Identify unmet needs in the LGI1 AIE patient journey
  4. Understand the impact of LGI1 AIE on quality of life of patients

Participant Criteria

Patients must be:

  • over the age of 18
  • officially diagnosed with LGI1 AIE 
  • located in Spain or Italy. 

Participation will be rewarded through a payment based on time spent and the patient’s country. Patients or caregivers may participate. 

What will taking part involve for the participants?

Alira Health will conduct 60-90 minute interviews with patients and/or patient caregivers via remote video call on a platform such as Teams or Zoom. Following the interview, patients will be asked to fill out a short survey confirming some aspects of their journey.

Where will the meetings take place?

Meetings will take place during the week between 1-30 November, times are flexible based on participants’ schedules.

Will participant expenses be reimbursed?

No expenses are foreseeable

Deadline

Please reach out by 1st December.

Contact

Email Eduardo Perez and Melchior Perella-Savarese at [email protected]  and [email protected]