IPOPI has joined forces with the University of Sheffield in the UK to launch a new PID Burden of treatment Study. The first phase of the study will kick-off during World Primary Immunodeficiencies Week (21-22 April 2016) with NMOs from 10 countries (in Europe and Canada) launching a web-based questionnaire to their members. Once the first phase is complete the PID specific questionnaire will be validated and IPOPI plans to roll out the study in additional countries and regions.

What is the Study For?

The study aims to quantify and measure the impact of the different immunoglobulin treatments adults take to manage their PID.  IPOPI believes that capturing this data, using a Burden of Treatment methodology developed by the University of Sheffield, the PID community will be better equipped with data that can help better advocate for access to the choice of treatments needed to meet the individual needs of those living with PIDs.

What does “Burden of Treatment” mean?

Burden of Treatment is a health economic term, recognized by healthcare providers who make decisions regarding what treatments are available for doctors to prescribe.  It is a measurement that captures the time, effort and impact that the treatment has on patients. This is different and distinct to the time, effort and impact of the PID itself – which in health economic terms, is called Burden of Illness.

Understanding and being able to quantify how different immunoglobulin treatments impact the lives of those living with PIDs, will be valuable data for all PID stakeholders, as different treatment burdens can have direct impact on the quality of life for those managing their PIDs.

Who is running the study?

The study is being conducted by the University of Sheffield in the UK in full cooperation with IPOPI. IPOPI will works with its NMOs to distribute and collect the responses to the survey across Europe and in Canada. A clinical research company, Paraxel, are coordinating the logistics of the study on behalf of IPOPI and Sheffield University.  The study is sponsored by Baxalta.

How will the survey data be used?

Having a PID specific validated Burden of Treatment questionnaire will be a great advantage to produce strong data. IPOPI believes that the results from the study will be highly useful to educate and raise awareness among policy makers, healthcare professionals and providers about the burden of treatment for people living with PIDs, and should help to identify means to reduce treatment burden.

Timeline

The study is being launched by IPOPI during World PI Week 22-29 April 2016. Respondents will have until August to complete the survey. Study results are expected by year end and publication is planned for early 2017.

Stay tuned for more news on IPOPI’s Burden of Treatment study soon!