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CompletedNCT03572036Updated Apr 19, 2021

Phosphodiesterase Type-5 Inhibitor Therapy in Sickle Cell People With Pulmonary Hypertension

An observational study in Pulmonary Hypertension and Sickle Cell Disease, sponsored by National Heart, Lung, and Blood Institute (NHLBI). Completed at 1 site in United States. Open to participants aged 18 Years to 99 Years. Per ClinicalTrials.gov, last updated 2021-04-19.

Sponsored by National Heart, Lung, and Blood Institute (NHLBI) · Observational

Study type
Observational
Model
Cohort
Time perspective
Retrospective
Enrollment
38
Ages
18 Years to 99 Years
Sex
All
01

Study summary

Background:

Sickle cell disease (SCD) is a common inherited blood disorder. Many people with SCD are at risk to get pulmonary hypertension (PH). PH means that the blood pressure in the blood vessels to the lungs is high, and is a serious disease and. Very few studies have looked at the success of treatments for PH in people with SCD. Researchers want to learn more about treating PH with a type of drug called phosphodiesterase type 5 inhibitors (PDE5-I). They will look at the records of people who have already joined other studies.

Objective:

To identify people who already joined NIH SCD protocols whose medical records should be reviewed. The review will look at the description of SCD patients with PH who have already taken PDE5-I and the outcomes for these people.

Eligibility:

Adults ages 18 and older with SCD and PH. They must have joined certain NIH studies and taken PDE5-I therapy for at least 16 weeks.

Design:

This study is a review of medical records.

Researchers will collect data from databases of existing studies. They will identify people in those studies who have SCD and PH and took the study drug for at least 16 weeks.

Researchers will review the full medical records of those people.

From that review, researchers will find participants who meet the inclusion criteria. They will extract data from those records.

Researchers will analyze the data. This includes results from heart and lung tests, imaging, and walking tests. It will also include results of a procedure called right heart catheterization.

Demographic data and lab data will also be collected.

Researchers will remove identifying information from the data, then share it in a database.

Read the detailed description

There is a lack of evidence-based treatment for patients with sickle cell disease (SCD) with pulmonary hypertension (PH). PH is a leading cause of mortality in SCD and is an independent risk factor for mortality in this population. SCD is a major health problem worldwide, primarily affecting people of African descent. In the United States approximately 100,000 individuals have SCD and 0.2% of African Americans have homozygous SS sickle cell disease, while 8% of African Americans carry one allele and have sickle cell trait. In developed countries, even in the current era of hydroxyurea, SCD patients have relatively shortened lifespans with a median life expectancy of approximately 48 years for females and 42 years for males.

PH affects up to 1/3 of adults screened by echocardiography and pre-capillary PH is diagnosed in 6% by right heart catheterization (RHC). Data suggest that either precapillary or post-capillary PH in SCD are associated with a 5-fold risk of early mortality, and SCD subjects with echocardiographic signs of both have a 13-fold risk of early mortality. Though a cause and effect relationship between the presence of PH and early mortality in adult subjects with SCD has not been conclusively established, data regarding the causes of death in a prospective observational study of adult SCD patients suggest that cardiopulmonary cause of death was present in at least 35% of patients.

The World Health Organization (WHO) reclassified SCD-related PH as Group 5 in 2013. Therefore, SCD-related PH is not eligible for vasodilator therapies currently available for WHO Group 1 pulmonary arterial hypertension (PAH). There have only been three prospective clinical trials of vasodilator therapies in sickle cell patients with RHC-defined PH. After the findings of the Walk-PHaSST study were reported, a strong recommendation against sildenafil in sickle cell patients with PH was made in guidelines published by the American Thoracic Society in 2014. However, a major limitation of the trial was that, in order to improve trial feasibility, subjects were eligible for enrollment based on an elevated TRV, as well as RHC-defined PH, leading to incomplete hemodynamic characterization of study patients. The physiologic understanding of the differences between subjects who developed SAEs and those who tolerated sildenafil remains poorly understood. In individual circumstances, some patients may have chosen to continue sildenafil. If some patients with SCD-related PH have continued to benefit from sildenafil therapy in the time since this clinical trial was reported, it would raise the question of whether a subgroup of SCD-related PH patients may still benefit from PDE5-Is and how these patients could be clinically characterized.

Given the difficulty of enrolling SCD-related PH patients into prospective, multi-center trials, for example as demonstrated by the ASSET trials being closed due to low enrollment, we plan to utilize existing clinical data available on patients who were documented to have RHC- defined PH prior to initiation of PDEI-5 therapy, in order to better characterize the use of this medication in patients with SCD-related PH.

02

Conditions studied

  • Pulmonary Hypertension
  • Sickle Cell Disease

Keywords

  • Outcomes Assessment
  • Sickle Cell Disease
03

In context

Hypertension, Pulmonary

1,105 studies on the registry are indexed under Hypertension, Pulmonary; 234 are open to participants now.

This study's enrollment of 38 is below the median of 116 across 386 observational studies indexed under Hypertension, Pulmonary.

Browse Hypertension, Pulmonary studies →

Lead sponsor

National Heart, Lung, and Blood Institute (NHLBI) is the lead sponsor of 1,117 studies on the registry; 71 are open to participants now.

Of its 57 completed or terminated interventional studies of FDA-regulated products, 49 (86%) have results posted.

Counted across the registry records on this site, refreshed daily.

04

Who can participate

Ages eligible
18 Years to 99 Years
Sexes eligible
All
Accepts healthy volunteers
No
Sampling method
Non-probability sample

Study population

Subjects aged 18 and older, participated in 001-H-0088 and 04-H-0161 and 1) a diagnosis of SCD 2) a diagnosis of PH 3) prescribed and/ or reported taking PDE5-I therapy for a duration of >16 weeks.

Eligibility criteria

  • INCLUSION CRITERIA:
  • Subjects aged 18 and older, participated in 001-H-0088 and 04-H-0161
  • a diagnosis of SCD
  • a diagnosis of PH by right heart catheterization
  • prescribed and/ or reported taking PDE5-I therapy for a duration of greater than or equal to 16 weeks. (We will not be able to use medication dispensation records alone to verify whether subjects were compliant as not all medications were dispensed directly from the NIH pharmacy.)
05

Study design

Observational model
Cohort
Time perspective
Retrospective
Enrollment
38 participants (actual)

Groups and cohorts

  • Arm 1

    aged 18 and older, participated in 001-H-0088 and 04-H-0161 and 1) a diagnosis of SCD 2) a diagnosis of PH 3) prescribed and/ or reported taking PDE5-I therapy for a duration of \>16 weeks.

06

What researchers measure

Primary outcomes

  1. Perform multivariable regression analyses for factors associated with morbidity and mortality

    We hypothesize that there are some subjects, for example those with RHC-defined PH, with particular characteristics who may benefit from improved morbidity and mortality with the use of long- term PDE5-I therapy.

    Time frame: At the end of data analysis

07

Study locations

1 site
  • National Heart, Lung and Blood Institute (NHLBI)
    Bethesda, Maryland 20892, United States
08

Updates

Tracking since Sep 25, 2026
No changes since tracking began. The registry record was last updated on Apr 19, 2021, before this site started recording changes on Sep 25, 2026. Its history is on ClinicalTrials.gov ↗
09

Registry details

Key details

Study ID
NCT03572036
Lead sponsor
National Heart, Lung, and Blood Institute (NHLBI)
Responsible party
Sponsor
First posted
Jun 28, 2018
Start date
Jun 20, 2018
Primary completion
Apr 16, 2021
Completion
Apr 16, 2021
Last update
Apr 19, 2021

Study contacts

Swee Lay Thein, M.D.
principal investigator · National Heart, Lung, and Blood Institute (NHLBI)

Oversight

FDA-regulated drug
No
FDA-regulated device
No
View the source record on ClinicalTrials.gov ↗

Not currently enrolling

This study is completed, as verified in Apr 2021. You cannot join it, but the record below documents what was studied.

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