NET-PRO PHR Design and Usability Study Recruitment

Advocacy Groups | <b>Neuroendocrine Cancer Awareness Network</b>

We are looking for participants to help us with a research study which will brainstorm and discuss ideas for helping adults with neuroendocrine cancer/carcinoid tumor use an online Personal Health Record (PHR).

What is required to be part of the study?

We are looking for participants to help us with a research study which will brainstorm and discuss ideas for helping adults with neuroendocrine cancer/carcinoid tumor use an online Personal Health Record (PHR). The PHR we are developing will play an important role in a recently funded national study, so it is crucial that we consider a wide range of views and computer experience in developing it.

We are looking for people who are:

·Over the age of 18

·Have been diagnosed with a neuroendocrine cancer/carcinoid tumor

·Able to either attend 3 online meetings or complete online surveys.

If you are interested in participating in this study, please fill out the screening questionnaire at the link below to see if you are eligible.

https://redcap.icts.uiowa.edu/redcap/surveys/?s=HKX9MR733989CHRY

If you have questions about the study, please contact Nick Rudzianski at 319-335-9783 or cph-netprostudy@uiowa.edu.

What is the NET-PRO PHR Design and Usability Study?

The Patient-Centered Outcomes Research Institute (PCORI) recently awarded $5 million to the University of Iowa College of Public Health to conduct a comparative effectiveness research (CER) study on the treatment of NETS. Currently, there are no clear guidelines regarding the sequencing of NET therapeutic options.

The three-year study, which will be led by Michael O’Rorke, assistant professor of epidemiology, will follow patients for up to five years to track their outcomes in the hopes of determining which care options work, for whom, and under which circumstances.

“Patients with NETs face difficult treatment decisions such as, what therapy would be best to try next? If I were to take this option now, what treatment options will be closed off to me in the future?” observes O’Rorke. “Clinicians are also unsure how best to tailor treatment selection to the characteristics of the patient and his or her tumor.”

The Neuroendocrine Cancer Awareness Network Inc will be participating in this project as a member of a patient advocacy advisory group.

The study will enroll approximately 3,000 patients from 14 participating research centers throughout the United States with gastroenteropancreatic (GEP-NETs) and lung NETs.

The study hopes to achieve four goals:

1-Describe the frequency and sequencing of common treatment

regimens currently in use and their outcomes.

2-Determine the impact of the following characteristics on the choice of

therapies:

• Patient — age, race and gender

• Clinical — preexisting conditions, medications and treatments

• Tumor — stage, grade and nodal involvement

3-Based on the findings from the first goal, formulate premise-reasoning-

-outcomes (PROs) and combine them with the medical record data

obtained from the second goal to compare the effectiveness of peptide

receptor radionuclide therapy regimens on outcomes of renal toxicity,

disease progression and quality of life.

4-Share the findings generated by the study in the National Patient-

Centered Clinical Research Network (PCORnet) to aid future Comparative

Effectiveness Research (CER) into NETs and other rare diseases.

“This large comparative effectiveness study, leveraging data from electronic medical records, chart abstractions, and patient reported outcomes, will go some way to defining the risks and benefits of the different therapeutic options currently available – findings which will be of benefit to patients and their caregivers, clinicians, and other stakeholders involved in their care,” says O’Rorke. “The infrastructure generated will also be of importance for future NET research using the PCORnet resources, and for CER in other rare diseases.”

PCORI is a nonprofit organization established by Congress that funds research to guide patients and those who care for them to make better-informed decisions about healthcare and treatment choices.