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Primary Care Hemoglobinpathy Exploration of Communication and Education Needs

Overview

About this study

The purpose of this study is is to explore strategies to identify patients who may benefit from hemoglobinopathy (HBP) screening during preconception using qualitative analysis. Secondarily, we plan to explore preconception HBP communication and education between providers and patients.

Participation eligibility

Participant eligibility includes age, gender, type and stage of disease, and previous treatments or health concerns. Guidelines differ from study to study, and identify who can or cannot participate. There is no guarantee that every individual who qualifies and wants to participate in a trial will be enrolled. Contact the study team to discuss study eligibility and potential participation.

Inclusion Criteria:

  • Adults (age 18 and older) with hemoglobinopathies.
  • Persons that are involved in public health initiatives, such as persons in patient support groups, the Minnesota Department of Health or the CDC.
  • Primary care physicians and expert groups like educationalists, experts in the field of HBP such as hematologists and genetic counselors or other healthcare professionals, proficient in English at the high school level.

Exclusion Criteria: 

  • < 18 years of age.
  • Medical students 

Note: Other protocol defined Inclusion/Exclusion Criteria may apply.

Eligibility last updated 3/12/2025. Questions regarding updates should be directed to the study team contact.
 

Participating Mayo Clinic locations

Study statuses change often. Please contact the study team for the most up-to-date information regarding possible participation.

Mayo Clinic Location Status Contact

Rochester, Minn.

Mayo Clinic principal investigator

Elisa Houwink, M.D., Ph.D.

Contact us for the latest status

Contact information:

Nathaniel Miller M.D.

(507) 446-5184

Miller.Nathaniel@mayo.edu

More information

Publications

Publications are currently not available

More about research at Mayo Clinic

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CLS-20568293

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