Understanding primary cold
agglutinin disease.

To most, leaving the house means simply heading out the door. But as someone struggling with primary cold agglutinin disease (also known as CAD or CAgD) you know it’s never that easy. Anything from a sip of a cold drink to a blast of air conditioning can trigger the worst of your symptoms – the painful, discolored extremities, the weakness, the fatigue – to the point where your condition is constantly looming over your daily activities and your life. Some days, it takes significant effort just to get moving. You’re forced to take precautions to reduce exposure to these triggers before you even set foot out the door.

Primary CAgD is a type of autoimmune hemolytic anemia in which the body’s immune system mistakenly attacks and destroys its own red blood cells. All primary CAgD patients have triggers that may make the symptoms worse, such as infection, changes in the weather, or even reaching into a freezer at the grocery store. And it’s a very rare condition. It’s so rare, scientists estimate that only 16 people per million have the disease worldwide.1 But there is good news. Right now, research is underway on a potential new treatment option for people with primary CAgD. And you may be able to take part.

The search for a treatment.

Bioverativ is looking for adults ages 18 and older with primary cold agglutinin disease to take part in a clinical research study – as part of the CAD Studies. The purpose of the CAD Studies is to determine the safety and effectiveness of the investigational medication BIVV009 for CAgD.

Individuals will be evaluated to determine their eligibility to participate in the CAD Studies. Each patient who qualifies will receive the investigational medication or an inactive substance (placebo) during the first six (6) months of participation. Following that period, all participants will receive the investigational medication for up to 24 months. The study medication, study-related medical exams, and study-related laboratory tests will be provided at no cost. Compensation for travel may also be available.

Find a participating research site 

1. https://www.researchgate.net/publication/7195053_Primary_chronic_cold_agglutinin_disease_A_population_based_clinical_study_of_86_patients