Data Collection

In order to establish a baseline of the number of individuals with SCD receiving disease modifying therapies, and then to be able to implement QI methods to increase those numbers, we must first develop shared metrics and definitions. We will work with the TDP leads, the HNCC and NASCC to establish the Globin Regional Data and Discovery (GRNDaD) Registry as a national SCD registry by the end of 2022.

GRNDaD is unique amongst existing databases as it was developed by SCD providers themselves, working collaboratively, to respond to unmet clinical need and inadequate national infrastructure. GRNDaD collects detailed patient-level data through which to document a robust clinical phenotype. GRNDaD will be used as the data collection tool across all TDP grantees. The UCSF team will provide training and TA to PSCRC sites about the GRNDaD registry data collection.


With the COVID-19 pandemic, there has been an abrupt shift to telemedicine for the delivery of sickle cell disease care. With this shift has come rapid deployment of technical resources and training as well as temporary improved reimbursement. The potential benefits of this change in the medical practice paradigm for the overall population of adults and children with sickle cell disease is unknown at present. 

The Regional Leads of the Sickle Cell Disease Treatment Demonstration Regional Collaborative Program (SCDTDRCP) has designed three studies to investigate the feasibility, utility and acceptability of the use of telemedicine (video or phone) for routine and well visits for children and adults with sickle cell disease. These studies include:

1. A telemedicine provider survey: Early in the 2017-18 grant year, HRSA announced the goal to launch a provider survey that would allow us to track the number of providers within each region of the SCDTDP who had participated in the Project ECHO telementoring sessions about sickle cell disease care. The survey asks about comfort level with providing sickle cell disease care and specifics about the number of patients with sickle cell disease seen and whether they were prescribed hydroxyurea. The PSCRC has developed the survey in REDCap so that the data can be directly entered into the database via a public survey link. We will be sending the link to all providers who have participated in past Project ECHO telementoring sessions sponsored by the PSCRC. The survey is longitudinal: it will be re-administered to participating providers 12 months after the first administration.

2. A telemedicine quality improvement data capture to track trends in the frequency of use of telemedicine compared to in-person visits and

3. A telemedicine patient satisfaction survey – In 2020, the CBO Lead determined that surveys of providers and individuals/families affected by sickle cell disease would be useful in context of pandemic, as well as for future planning to increase access.

  • Provider survey implemented through Southeast Region – May 2020
  • Patient/family survey administered by PSCRC CBOs – May 2020
  • Update from 2020 survey with goals to:
    • Understand telehealth utilization for pediatric and adult patients living with SCD
    • Determine barriers/facilitators to accessing care via telehealth
    • Identify changes in access to telehealth services

In 2021, the CBO and PSCRC Leads determined that additional survey from providers and individuals/families affected by sickle cell disease would be useful in context of pandemic farther enhance improvement in access to services.

  • Surveys administered by CBOs, CHWs and introduced by providers in 11 states
  • Surveys completed between March 1-July 15, 2021.
  • 362 surveys completed
  • Participants were individuals with SCD or caregivers of individuals with SCD - asked series of 34 questions
    • Questions formulated by SCDTDP regional leads as well as questions carried over from last year’s survey

The conclusion of the survey found the following:

  • CBOs, CHWs and PSCRC site leads were able to work effectively together to understand needs and preferences of individuals with SCD and their families regarding telehealth
  • Telehealth is important to improving access to healthcare and eliminating disparities, so adequate reimbursement is crucial
  • Optimal combinations of in-person and remote access to healthcare should be determined based on need
responses to 2021 survey graph

The quality improvement study will allow us to gauge the impact of the option for telemedicine visits in terms of scheduling patterns and visit completion rates. The surveys are designed to capture comfort level with telemedicine, acceptability of telemedicine and overall views on the use of telemedicine for sickle cell disease among patients and providers. In addition, the baseline provider survey is designed to assess “readiness” to initiate telemedicine.

Understanding how feasible and successful telemedicine visits are can inform continued use once the pandemic is under control and decisions about telemedicine resources and reimbursement are being reconsidered.

For more information, contact Marsha Treadwell, PhD at or Maxine Gaspar, Clinical Research Coordinator, Department of Hematology/Oncology, UCSF Benioff Children’s Hospital Oakland at