Utilizing Clinical Trial Nursing Services to Improve Retention & Facilitate Data Collection in a Rare Disease Trial: A Case Study

UBC was contracted to provide clinical trial nursing services in a pivotal Phase III rare autoimmune disease trial. As this indication affects less than 2% of the population, ensuring that enrolled patients completed study requirements without loss-to-follow up was crucial. The study was designed to assess the efficacy and safety of the study drug compared with placebo in adults who had been receiving the study drug via a separate open label trial.


Autoimmune Awareness: One Condition, Many Diseases

Approximately 50 million Americans, or one in five people, have an autoimmune disease. In these patients, the immune system attacks healthy cells by mistake. These diseases, more than 130 known at this time, can affect many parts of the body, including the joints, skin, kidneys, heart, lungs, blood vessels, and brain.1  Examples of autoimmune diseases include: diabetes, rheumatoid arthritis, lupus, multiple sclerosis and psoriasis.

In recognition of National Autoimmune Disease Awareness Month, we asked two of UBC’s registered nurses, specializing in autoimmune diseases, to talk about their roles and the care they provide patients affected by autoimmune diseases.


Nurses: They’re Not Just in Hospitals Anymore

Consistently outranking other professionals for honesty and ethical standards, today’s nurses play an increasingly important role.  No longer concentrated solely in hospitals and doctors’ offices, nurses are reaching patients where they live, providing education and affecting adherence, and dramatically impacting the cost and effectiveness of healthcare.

Read the latest article about how nurses provide a significant resource for the development and execution of adherence programs.


Nurses: They’re Not Just in Hospitals Anymore

In the age of modernized medicine, patients were primarily limited to two sites of care: the physician’s office or the hospital. However, since 1965 when Medicare first included home health nursing as a benefit, nurses provide care in patients’ homes as well as in a variety of other locations, including: 

  • Urgent care clinics
  • Outpatient infusion centers
  • Retail health clinics
  • Retail pharmacies 

Nurses also provide education and adherence services to patients by telephone through contact centers. 


Across the Miles...But Never Out of Reach

When a patient insists on speaking with a supervisor, our Specialty Pharmacy nurses are happy to oblige.  They feel strongly about helping patients feel comfortable with their therapies and providing them access to additional information and education.  These nurses spend each day on the phone, speaking to patients and healthcare providers, answering questions, and guiding patients through therapy.   

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