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Research Study Involving Interviews with Pheochromocytoma or Paraganglioma Patients

Have you been diagnosed with pheochromocytoma or paraganglioma?  

Update 07/30/2013: This research study has been terminated, but we are keeping the link below in an effort to provide information about the content of this study.

Victoria Divino of Oxford Outcomes reports that they have had quite a bit of success recruiting through the support group, but their eligibility criteria is limiting, and they are still hoping to recruit a few more participants for the study. This ad explains the study in more detail, so they are hoping to gain more interest.

"Oxford Outcomes is conducting a qualitative research study involving interviews with pheo/para patients in order to evaluate the clarity, relevance, and comprehensiveness of two questionnaires (one cancer specific and one pheo/para specific), and to evaluate how effective these questionnaires are at assessing the quality of life and symptoms of patients with pheochromocytoma or paraganglioma. Interviews will be used to evaluate their appropriateness for use during clinical trials when they will be used to determine treatment benefit from the perspective of the patient."
"We are seeking U.S. patients, 18 years of age or older, with a documented (medical record) diagnosis of either pheochromocytoma or paraganglioma with active symptoms or who are within 60 days of curative therapy." "Participating would involve a brief interview, lasting approximately 1 hour. Our office is located in the Washington DC metro area. If in-person interviews are not feasible, interviews can take place over the phone. Participants will be compensated for their time. Please contact Victoria at 240-482-0034 if you are interested in participating or would like to learn more. Oxford Outcomes is conducting this study on behalf of Molecular Insight Pharmaceuticals. Our study has been registered under and can be found here: