" /> " /> " />
Find trials
Consejos para buscar

Gene Editing Research With a Patient Centered Approach

Overview

Información sobre este estudio

This is an interview study to understand the views of people with the lived experience of 10 different genetic conditions on gene modification therapies, and specifically on prenatal gene editing. Prenatal gene editing is not happening now, but it is possible that prenatal gene editing will be available in the next few years, at least in a research setting, and we want to know your thoughts about the direction this technology is going. We to hope speak with many different stakeholders (patients and their families, clinicians, scientists) with diverse perspectives to understand values and priorities for prenatal gene editing, including whether and how to make this technology available.

Elegibilidad para la participación

Los requisitos de elegibilidad de los participantes incluyen la edad, el sexo, el tipo y el estadio de la enfermedad, y los problemas de salud o tratamientos previos. Las pautas difieren de un estudio a otro e identifican quiénes pueden o no pueden participar. No hay garantía de que cada persona elegible que desee participar en un ensayo se inscribirá. Comunícate con el equipo del estudio para analizar la elegibilidad del estudio y la posible participación.

Inclusion Criteria:

  • A person with one of the identified genetic conditions OR a parent or guardian of a child or young adult previously diagnosed with the condition or otherwise at risk of the condition OR a spouse or primary relative or primary caretaker of an individual currently experiencing or who has died as a result of a disease of interest;
    • The diseases of interest are:
      • Tay Sachs;
      • Spinal Muscular Atrophy;
      • Huntington’s;
      • Thalassemia;
      • Sickle Cell;
      • Phenylketonuria;
      • BRCA1 and 2;
      • Alzheimer’s;
      • Autism Spectrum  Disorder;
  • Hereditary Deafness or Hearing Loss.
  • ≥ 18 years of age.
  • English speaker.

Exclusion Criteria: 

  • Not affected or not affected by a disease of interest.
  • No parental, spousal, or familial relationship to a person with a disease of interest..
  • < 18 years of age.
  • Not an English speaker.

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

Eligibility last updated 6/06/2024. Questions regarding updates should be directed to the study team contact.

Sedes participantes de Mayo Clinic

Los estatus de los estudios cambian con frecuencia. Comunícate con el equipo del estudio para obtener la información más actualizada acerca de la posibilidad de participar.

Sede de Mayo Clinic Estatus Contacto

Rochester, Minn.

Investigador principal de Mayo Clinic

Karen Meagher, Ph.D.

Abierto para la inscripción

Contact information:

Kirsten Riggan M.S., M.A.

(507) 284-2046

Riggan.Kirsten@mayo.edu

Jacksonville, Fla.

Investigador principal de Mayo Clinic

Megan Allyse, Ph.D.

Abierto para la inscripción

Contact information:

Laura Pacheco-Spann M.S.

(904) 953-0408

PachecoSpann.Laura@mayo.edu

More information

Publicaciones

Publications are currently not available

Otros temas en investigación

.
CLS-20541213

Mayo Clinic Footer