Memphis, TNNCT05810181Now EnrollingIRB Ready

Sickle Cell Disease Clinical Trial in Memphis, TN

Access cutting-edge sickle cell disease treatment through this clinical trial at a research site in Memphis. Study-provided care at no cost to qualified participants.

Sponsored by St. Jude Children's Research Hospital

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Expert Care in Memphis

Access sickle cell disease specialists at no cost

IRB Approved

This study follows strict safety protocols and ethical guidelines

No-Cost Care

All study-related sickle cell disease treatment provided free

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Check if you qualify for this sickle cell disease clinical trial in Memphis, TN

Secure & Confidential

Your information is protected and will only be shared with the research team.

Why Participate?

  • No-Cost Study Care

  • Local to Memphis

    Convenient for TN residents

  • Cutting-Edge Treatment

    Access to innovative therapies

  • Expert Medical Care

    Close monitoring by specialists

  • Possible Compensation*

    For time and travel

*Compensation varies by study. Confirm details with coordinator.

Simple Process

  1. 1Submit this form
  2. 2Phone screening
  3. 3Visit Memphis site if eligible
  4. 4Begin participation

About This Sickle Cell Disease Study in Memphis

This prospective mixed-method interview study aims to qualitatively describe the beliefs, attitudes, and informational needs around gene therapy for rare pediatric diseases among patients and parents of children with a rare disease targeted for treatment using gene therapy techniques. Using learned insights, the team will develop an online platform providing educational content and patient decision aids for patients and their families.

Sponsor: St. Jude Children's Research Hospital

Who Can Participate

Inclusion Criteria

For Group 1 participants only (Undergone Gene Therapy):
Parent/caregiver whose child has undergone gene therapy. OR Parent/caregiver of a child who died after receiving gene therapy at least 6 months prior to enrollment, but no more than 24 months prior to enrollment, to be contacted no sooner than 3 months after the death has occurred and no longer than 2 years. OR Patients age 8 and above who have undergone gene therapy.
Willingness to participate in one-on-one video interview with a study team member using a personal mobile device or computer with working internet connection.
Must be willing to provide verbal informed consent.
Release of information form signed by participant providing our study team with permission to contact healthcare provider to verify their diagnosis and receipt of gene therapy (if received).
Successful verification of diagnosis of rare genetic disease targeted for treatment using gene therapy.
A positive confirmation on receipt of gene therapy and type received from their healthcare provider (only for those received gene therapy).
For Group 2 participants only (Offered, but did not Undergo Gene Therapy):
Parent/caregiver of children (or patients 8 and above ) with a rare genetic disease who had been offered but were not eligible for a trial or decided against receiving gene therapy.
Willingness to participate in one-on-one video interview with a study team member using a personal mobile device or computer with working internet connection.
Must be willing to provide verbal informed consent.
Signed release of information form providing GeneTx study team with permission to contact participant's healthcare provider to verify the diagnosis.
Successful verification of diagnosis of rare genetic disease targeted for treatment using gene therapy.
For Group 3 participants only (Provider Interviews):
Healthcare worker who has provided care to ≥ 2 patients receiving gene therapy.
Willingness to participate in one-on-one video (or in-person) interview with a study team member using a personal mobile device or computer with working internet connection.
Informed consent from a study participant.
For Group 4 participants only (Undergone Gene Therapy for Bone Marrow Failure Condition):
Parent/caregiver whose child has undergone gene therapy. OR Parent/caregiver of a child who died after receiving gene therapy at least 6 months prior to enrollment, but no more than 24 months prior to enrollment, to be contacted no sooner than 3 months after the death has occurred and no longer than 2 years. OR Patients age 8 and above who have undergone gene therapy.
Willingness to participate in one-on-one video interview with a study team member using a personal mobile device or computer with working internet connection.
Must be willing to provide verbal informed consent.
Release of information form signed by participant providing our study team with permission to contact healthcare provider to verify their diagnosis and receipt of gene therapy (if received).
Successful verification of diagnosis of rare genetic disease targeted for treatment using gene therapy.
A positive confirmation on receipt of gene therapy and type received from their healthcare provider (only for those received gene therapy).
For Group 5 participants only (Offered, but did not Undergo Gene Therapy for Bone Marrow Failure Condition ):
Parent/caregiver of children (or patients 8 and above ) with a bone marrow failure disease who had been offered but were not eligible for a trial or decided against receiving gene therapy.
Willingness to participate in one-on-one video interview with a study team member using a personal mobile device or computer with working internet connection.
Must be willing to provide verbal informed consent.
Signed release of information form providing GeneTx study team with permission to contact participant's healthcare provider to verify the diagnosis.
Successful verification of diagnosis of rare genetic disease targeted for treatment using gene therapy.
For Group 6 participants only (Never offered gene therapy for Bone Marrow Failure Condition):
Parent/caregiver of children (or patients 8 and above ) with a bone marrow failure disease who had not been offered gene therapy.
Willingness to participate in one-on-one video interview with a study team member using a personal mobile device or computer with working internet connection.
Must be willing to provide verbal informed consent.
Signed release of information form providing GeneTx study team with permission to contact participant's healthcare provider to verify the diagnosis.
Successful verification of diagnosis of rare genetic disease targeted for treatment using gene therapy.
For Group 7 participants only (Provider Interviews for Bone Marrow Failure Condition):
Healthcare worker who has provided care to ≥ 2 patients receiving gene therapy.
Willingness to participate in one-on-one video (or in-person) interview with a study team member using a personal mobile device or computer with working internet connection.
Informed consent from a study participant.

Exclusion Criteria

(for all 7 groups):
Participants who are unable to converse fluently in English will be excluded.
Inability or unwillingness of research participant to give verbal informed consent.
Participants who lack access to a computer or mobile device that supports video communications will be excluded.
Condition or chronic illness, which in the opinion of the PI/Co-I, makes participation unsafe or untenable (i.e., cognitive impairment, concurrent acute morbidity).

Not sure if you qualify? Submit your interest and a study coordinator will help determine your eligibility.

Frequently Asked Questions

Q:Is this study available in Memphis?

Yes, this clinical trial (NCT05810181) has an active research site in Memphis, TN that is currently enrolling participants.

Q:Is it safe to participate?

Clinical trials follow strict safety guidelines and ethical standards. This study has been reviewed and approved, and participants are closely monitored by medical professionals. You can withdraw at any time.

Q:Will I be compensated?

Many clinical trials offer compensation for your time and travel expenses. Specific compensation details will be discussed during the screening process. All study-related medical care is provided at no cost.

Q:Can I leave the trial if I change my mind?

Absolutely. Participation is completely voluntary. You have the right to withdraw from the study at any time, for any reason, without penalty.

Still have questions? Our study coordinators are here to help.

Sickle Cell Disease Treatment Options in Memphis, TN

If you're searching for sickle cell disease treatment options in Memphis, TN, this clinical trial (NCT05810181) may be an excellent opportunity. Clinical trials provide access to cutting-edge treatments that aren't yet available to the general public, often at no cost to participants.

Our Memphis research site is actively enrolling participants for this clinical trial. You'll receive care from experienced sickle cell disease specialists who are at the forefront of medical research. All study-related care, including examinations, treatments, and monitoring, is provided at no cost to qualified participants.

Looking for more options? Browse all sickle cell disease clinical trials near you to find additional studies recruiting in your area.

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