Link between PKLR gene variants and sickle cell disease symptoms

Genotype -Phenotype Correlation of PKLR Variants With Pyruvate Kinase, 2,3-Diphosphglycerate and ATP Activities in Red Blood Cells of Patients With Sickle Cell Disease

National Institutes of Health Clinical Center (CC) · NCT03685721

This study is trying to see if changes in a specific gene can affect the symptoms of sickle cell disease in people.

Quick facts

Study typeObservational
Enrollment800 (estimated)
Ages18 Years to 80 Years
SexAll
SponsorNational Institutes of Health Clinical Center (CC) (nih)
Locations1 site (Bethesda, Maryland)
Trial IDNCT03685721 on ClinicalTrials.gov

What this trial studies

This observational study aims to investigate the relationship between genetic variants in the PKLR gene and the symptoms of sickle cell disease (SCD). Researchers will analyze how these variants affect the activity of pyruvate kinase and other proteins in red blood cells, which are crucial for maintaining cell function. Participants will be screened based on specific criteria, including age and genetic background, and will provide DNA samples for analysis. The study seeks to enhance understanding of the genetic factors influencing SCD complications.

Who should consider this trial

Good fit: Ideal candidates for this study are adults aged 18-80 of African descent, with or without sickle cell disease.

Not a fit: Patients who have had a blood transfusion in the last 8 weeks or have a known deficiency of pyruvate kinase may not benefit from this study.

Why it matters

Potential benefit: If successful, this study could lead to improved management strategies for patients with sickle cell disease based on their genetic profiles.

How similar studies have performed: While the specific approach of correlating PKLR variants with SCD symptoms is novel, similar genetic studies have shown promise in understanding other genetic disorders.

Eligibility criteria

Show full inclusion / exclusion criteria
* INCLUSUION CRITERIA:
* Between 18 and 80 years of age
* African or of African descent
* Capacity to consent is required

EXCLUSION CRITERIA:

* Self-reported history of blood transfusion within the last 8 weeks
* Known to have pyruvate kinase deficiency and be on AG348
* All volunteers will undergo the consent process under this protocol to allow for eligibility assessment. Once they have been consented to participate, they will undergo procedures per Protocol.

Where this trial is running

Bethesda, Maryland

Study contacts

How to participate

  1. Review the eligibility criteria above with your treating physician.
  2. Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
  3. Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.

View on ClinicalTrials.gov →

Conditions: Sickle Cell, PKLR Variants, Adenosine Triphosphate Activities, ATP, Trait, GDP, Genetics, Natural History

Last reviewed 2026-05-15 by the Find a Trial editorial team. Information on this page is for educational purposes and is not medical advice. Always consult qualified healthcare professionals about clinical trial participation.