Sickle Cell DiseaseNCT07540767
Development of a Provider-Focused Intervention to Improve Health Outcomes in Pediatric Sickle Cell Disease
A study testing Individuation and Perspective-Taking (IPT) and pediatric SCD pain management education session in people with Sickle Cell Disease and Sickle Cell Anemia in Children, run by Connecticut Children's Medical Center at 1 site in United States.
Trial summary
The goal of this interventional study is to learn about the impact of an intervention for health care providers that teaches individuation and perspective-taking (IPT) skills to enhance patient-centered communication in pediatric sickle cell disease (SCD). Read more about this study
- Who is it for?
- Ages 18 years and olderHealthy volunteers can take part
- Conditions the study is for
- Sickle Cell Disease, Sickle Cell Anemia in Children, Sickle Cell Disease (SCD)
- What is being tested?
- Individuation and Perspective-Taking (IPT) and pediatric SCD pain management education session
- Type of treatment
- Lifestyle or therapy programme
- Could I receive a placebo?
- No, everyone receives an active treatment
- How many people
- 30 participants
- Where
- 1 siteUnited States
- Study dates
- 1 Sep 2027to 30 Jun 2030
- Phase
- Interventional
- Are there results?
- Not yet: the study is under way
Key requirements
Who can take part, as listed by the sponsor. Only the study team can confirm whether you are eligible, so take this list to your doctor.
- Ages 18 years and older
- All sexes
- Healthy volunteers accepted
- Adult, Older adult
Who may be able to join
- Licensed health care provider (HCP) who provides care to youth with SCD
- HCP employed by Connecticut Children's, Yale New Haven Children's Hospital, or Children's Hospital of Philadelphia and primary work area is Hematology/Oncology
Who cannot join
- HCP who does not provide care to youth with SCD
- HCP is a medical trainee, not including fellows
- HCP not employed by CT Children's, Yale New Haven Children's Hospital, or Children's Hospital of Philadelphia
- Not fluent in English
Trial locations and contacts
1 site in 1 country. Contact the study team or a site near you to ask about taking part.
United States1 site
Connecticut Children's Medical Center
Hartford, Connecticut, 06106
About this study
The goal of this interventional study is to learn about the impact of an intervention for health care providers that teaches individuation and perspective-taking (IPT) skills to enhance patient-centered communication in pediatric sickle cell disease (SCD). The main question it aims to answer is:
Does an intervention that teaches individuation and perspective-taking (IPT) skills to pediatric sickle cell disease (SCD) health care providers (HCPs) enhance patient-centered communication?
Read more
Researchers will compare the IPT intervention to a control group who will receive education about SCD pain management to see if the IPT intervention improves patient-centered communication.
Participants will complete baseline surveys and then be randomly assigned into the intervention or control group. After completing their assigned session (IPT training or education), they will be asked to complete the same surveys as completed at baseline.
Read the detailed description
Research documents poor health outcomes for youth with sickle cell disease (SCD), and interventions for patients and families demonstrate only variable effectiveness. More recent studies have called for interventions targeting health care providers (HCPs) to improve patient health outcomes. The investigators developed and piloted an individuation and perspective-taking (IPT) intervention for pediatric SCD HCPs.
IPT currently consists of one 90-minute virtual training session that incorporates didactic education and practice using the IPT skills in the context of SCD patient stories. After reviewing didactic information about the impact of patient-centered communication on patient health behaviors (e.g., adherence), HCPs are introduced to the two IPT skills and taught how to practice them by changing their communication with patients. HCPs then watch short videos that are publicly available online depicting 3-5 patients with SCD that differ in demographics and symptom presentation. The intervention facilitator uses verbal prompts (e.g., How do the participants think that patient must be feeling?) to assist HCPs in applying the IPT skills to each of these patients. Finally, the facilitator leads a discussion about HCP responses that are and are not consistent with the IPT skills and explores ways HCPs can apply the skills in their clinical practice. This single-session virtual format was well-received and deemed feasible by HCPs in the investigators' formative work, who expressed concerns about attending multiple sessions.
The primary objective is to test the preliminary efficacy of the IPT intervention on improving patient-centered communication in a multi-center sample of pediatric SCD HCPs using a randomized design. HCPs from three medical centers will be randomized to the IPT intervention or to a didactic information control group, completing pre- and post-test measures to assess changed in patient-centered communication.
The investigators hypothesize that the IPT intervention will have positive effects on HCP communication and has the potential to impact patient-reported (e.g., trust, satisfaction with care, and self-efficacy) and clinical health (e.g., pain management, frequency of admission, hydroxyurea adherence) outcomes for adolescents with SCD. Improving HCPs patient-centered communication may increase patients' disease management self-efficacy, thereby improving adherence to preventative measures and reducing the frequency of emergent encounters and hospital admissions.
- Conditions
- Sickle Cell Disease, Sickle Cell Anemia in Children, Sickle Cell Disease (SCD), Sickle Cell, Sickle Cell Anemia (HbSS)
- Being tested
- Individuation and Perspective-Taking (IPT), pediatric SCD pain management education session
- Keywords
- sickle cell, pediatrics
- Medical subject headings
- Anemia, Sickle Cell
What participants receive
What participants receive. In a randomised study each person is assigned to one group by chance.
Individuation and Perspective-Taking (IPT)Behavioural
IPT currently consists of one 90-minute virtual training session that incorporates didactic education and practice using the IPT skills in the context of SCD patient stories. After reviewing didactic information about the impact of patient-centered communication on patient health behaviors (e.g., adherence), HCPs are introduced to the two IPT skills and taught how to practice them by changing their communication with patients. HCPs then watch short videos that are publicly available online depicting 3-5 patients with SCD that differ in demographics and symptom presentation. The intervention facilitator uses verbal prompts (e.g., How do participants think that patient must be feeling?) to assist HCPs in applying the IPT skills to each of these patients. Finally, the facilitator leads a discussion about HCP responses that are and are not consistent with the IPT skills and explores ways HCPs can apply the skills in their clinical practice.
pediatric SCD pain management education sessionOther
The SCD pain management education session currently consists of one 90-minute virtual presentation that focuses on best practices in pediatric SCD pain management, including published guidelines from the American Society of Hematology.
| Study group | Role | What they receive |
|---|---|---|
| Individuation Perspective-Taking (IPT) Intervention | Experimental | Health care provider participants will attend a virtual session presenting the IPT intervention. Receives: Behavioral: Individuation and Perspective-Taking (IPT) |
| Educational Control Group | Active comparator | Health care provider participants will attend a virtual presentation on didactic information about best practices in pediatric SCD pain management. Receives: Other: pediatric SCD pain management education session |
What is being measured
The primary outcome is the main question the study is designed to answer.
Adapted Measure of Patient-Centered Communication (MPCC)
The adapted Measured of Patient-Centered Communication (MPCC) is an observer-scored set of indices that assesses patient-centered communication during clinic visits. In this adapted version, Individuation and Perspective-Taking are two additional components that will be scored, along with the six components of the Patient-Centered Clinical Method. Each of these components has been operationalized to be reliably scored by independent raters. For each patient video, the participant's communication will be scored for the presence/absence of each of these 8 components. Thus, a given patient video will be summarized using a total score ranging from 0 to 8, with higher scores reflecting greater patient-centered communication. For this study, two independent reviewers (the PI and RA) will score participants' responses to each patient video for the 8 components.
Measured: From enrollment to up to 6 weeks post-intervention/control
Secondary outcomes (1)
Interpersonal Reactivity Index (IRI)
The Interpersonal Reactivity Index (IRI) is a 28-item self-report measure used to assess four facets of empathy with four subscales (7 items each): Perspective-Taking (adopting the point of view of others), Empathic Concern (feeling sympathy and concern), Fantasy (ability to imagine the feelings of fictitious characters), and Personal Distress (feeling anxiety/unease during tense interpersonal situations). Responses are given on a 5-point Likert scale and summed for a total score ranging from 0-112, with higher scores indicating greater perceived empathy (better outcome). The IRI has been used to assess empathy in medical students and HCPs.
Measured: From enrollment to up to 6 weeks post-intervention/control
Timeline
From the start of the study to its completion; the mark is today. Estimated dates are the sponsor’s plan.
- First posted20 Apr 2026
- Study start1 Sep 2027 (estimated)
- Primary completion31 Mar 2030 (estimated)
- Study completion30 Jun 2030 (estimated)
Resources
- Official record on ClinicalTrials.govThe registry entry this page is built from, with its full change history.
- Publications (26)Papers the sponsor has linked to this study.
- Other trials for Sickle Cell DiseaseStudies of the same condition, open and under way.
- What the trial phases meanHow a treatment moves from first tests in people to approval.
More details
For doctors and researchers: how the study is designed, who runs it, and its registry IDs.
Study design
- Study type
- Interventional
- Phase
- Phase N/A
- Primary purpose
- Treatment
- Allocation
- Randomised
- Intervention model
- Parallel groups
- Masking
- Single blind
- Who is masked
- Investigator
- Enrolment
- 30 participants (estimated)
Sponsor and investigators
- Lead sponsor
- Connecticut Children's Medical Center
- Sponsor type
- University, hospital or other
- Collaborators
- National Heart, Lung, and Blood Institute (NHLBI), Children's Hospital of Philadelphia, Yale-New Haven Children's Hospital
- Responsible party
- Principal investigator, Siddika Mulchan, Connecticut Children's Medical Center
- Investigators
- Siddika Mulchan, PsyD, Principal investigator, Connecticut Children's Medical Center
IDs, dates and publications
- ClinicalTrials.gov ID
- NCT07540767
- Sponsor's protocol ID
- 25-152
- Other IDs
- 1K23HL175237-01A1
- Status last verified
- Apr 2026
- First submitted
- 13 Apr 2026
- Last updated
- 29 Apr 2026
- Results posted
- No
- Data monitoring committee
- No
- FDA-regulated drug
- No
- FDA-regulated device
- No
- Individual data sharing
- No: Data will be aggregated for all study analyses.
Publications
Maatouk-Burmann B, Ringel N, Spang J, Weiss C, Moltner A, Riemann U, Langewitz W, Schultz JH, Junger J. Improving patient-centered communication: Results of a randomized controlled trial. Patient Educ Couns. 2016 Jan;99(1):117-24. doi: 10.1016/j.pec.2015.08.012. Epub 2015 Aug 14.
PubMed 26490488Devine PG, Forscher PS, Austin AJ, Cox WT. Long-term reduction in implicit race bias: A prejudice habit-breaking intervention. J Exp Soc Psychol. 2012 Nov;48(6):1267-1278. doi: 10.1016/j.jesp.2012.06.003.
PubMed 23524616Carlson MM, Bear B, Alderfer MA, Schultz CL, Monroe DP, Crosby LE, Hildenbrand AK. Family-centered communication in pediatric sickle cell disease. Pediatr Blood Cancer. 2022 Dec;69(12):e30016. doi: 10.1002/pbc.30016. Epub 2022 Sep 24.
PubMed 36152000Badawy SM, Thompson AA, Holl JL, Penedo FJ, Liem RI. Healthcare utilization and hydroxyurea adherence in youth with sickle cell disease. Pediatr Hematol Oncol. 2018 Aug-Sep;35(5-6):297-308. doi: 10.1080/08880018.2018.1505988. Epub 2019 Jan 12.
PubMed 30636474Quarmyne MO, Dong W, Theodore R, Anand S, Barry V, Adisa O, Buchanan ID, Bost J, Brown RC, Joiner CH, Lane PA. Hydroxyurea effectiveness in children and adolescents with sickle cell anemia: A large retrospective, population-based cohort. Am J Hematol. 2017 Jan;92(1):77-81. doi: 10.1002/ajh.24587. Epub 2016 Nov 18.
PubMed 27761932Haywood C Jr, Diener-West M, Strouse J, Carroll CP, Bediako S, Lanzkron S, Haythornthwaite J, Onojobi G, Beach MC; IMPORT Investigators; IMPORT Investigators. Perceived discrimination in health care is associated with a greater burden of pain in sickle cell disease. J Pain Symptom Manage. 2014 Nov;48(5):934-43. doi: 10.1016/j.jpainsymman.2014.02.002. Epub 2014 Apr 15.
PubMed 24742787Labbe E, Herbert D, Haynes J. Physicians' attitude and practices in sickle cell disease pain management. J Palliat Care. 2005 Winter;21(4):246-51.
PubMed 16483093Haywood C Jr, Williams-Reade J, Rushton C, Beach MC, Geller G. Improving Clinician Attitudes of Respect and Trust for Persons With Sickle Cell Disease. Hosp Pediatr. 2015 Jul;5(7):377-84. doi: 10.1542/hpeds.2014-0171.
PubMed 26136312Campbell AD, Ross PT, Kumagai AK, Christner JG, Lypson ML. Coming of age with sickle cell disease and the role of patient as teacher. J Natl Med Assoc. 2010 Nov;102(11):1073-8. doi: 10.1016/s0027-9684(15)30735-5.
PubMed 21141297Darbari DS, Wang Z, Kwak M, Hildesheim M, Nichols J, Allen D, Seamon C, Peters-Lawrence M, Conrey A, Hall MK, Kato GJ, Taylor JG 6th. Severe painful vaso-occlusive crises and mortality in a contemporary adult sickle cell anemia cohort study. PLoS One. 2013 Nov 5;8(11):e79923. doi: 10.1371/journal.pone.0079923. eCollection 2013.
PubMed 24224021Kidwell K, Albo C, Pope M, Bowman L, Xu H, Wells L, Barrett N, Patel N, Allison A, Kutlar A. Characteristics of sickle cell patients with frequent emergency department visits and hospitalizations. PLoS One. 2021 Feb 22;16(2):e0247324. doi: 10.1371/journal.pone.0247324. eCollection 2021.
PubMed 33617594Kayle M, Docherty SL, Sloane R, Tanabe P, Maslow G, Pan W, Shah N. Transition to adult care in sickle cell disease: A longitudinal study of clinical characteristics and disease severity. Pediatr Blood Cancer. 2019 Jan;66(1):e27463. doi: 10.1002/pbc.27463. Epub 2018 Sep 24.
PubMed 30251318Tanabe P, Spratling R, Smith D, Grissom P, Hulihan M. CE: Understanding the Complications of Sickle Cell Disease. Am J Nurs. 2019 Jun;119(6):26-35. doi: 10.1097/01.NAJ.0000559779.40570.2c.
PubMed 31135428Burgess D, van Ryn M, Dovidio J, Saha S. Reducing racial bias among health care providers: lessons from social-cognitive psychology. J Gen Intern Med. 2007 Jun;22(6):882-7. doi: 10.1007/s11606-007-0160-1. Epub 2007 Mar 3.
PubMed 17503111Haywood C Jr, Bediako S, Lanzkron S, Diener-West M, Strouse J, Haythornthwaite J, Onojobi G, Beach MC; IMPORT Investigators. An unequal burden: poor patient-provider communication and sickle cell disease. Patient Educ Couns. 2014 Aug;96(2):159-64. doi: 10.1016/j.pec.2014.05.013. Epub 2014 May 23.
PubMed 24935607
Study at a glance
From the registry record, last updated by the sponsor on 29 Apr 2026. Recruitment status is as the sponsor reported it: confirm with the study team.
- Official title
- Development of a Provider-Focused Intervention to Improve Health Outcomes in Pediatric Sickle Cell Disease
- ClinicalTrials.gov ID
- NCT07540767
- Acronym / sponsor ID
- 25-152
- Conditions
- Sickle Cell Disease, Sickle Cell Anemia in Children, Sickle Cell Disease (SCD), Sickle Cell, Sickle Cell Anemia (HbSS)
- Keywords
- sickle cell, pediatrics
- Study type
- Interventional
- Recruitment status
- Not yet recruiting
- Enrolment
- 30 participants (estimated)
- Lead sponsor
- Connecticut Children's Medical CenterUniversity, hospital or other
- Collaborators
- National Heart, Lung, and Blood Institute (NHLBI), Children's Hospital of Philadelphia, Yale-New Haven Children's Hospital
- Study start
- 1 Sep 2027 (estimated)
- Primary completion
- 31 Mar 2030 (estimated)
- Study completion
- 30 Jun 2030 (estimated)
- First posted
- 20 Apr 2026 (actual)
- Results
- Not posted in the source record
Clinical summary
The research question as the sponsor registered it. This describes what the study plans to test, not what it found.
The goal of this interventional study is to learn about the impact of an intervention for health care providers that teaches individuation and perspective-taking (IPT) skills to enhance patient-centered communication in pediatric sickle cell disease (SCD). The main question it aims to answer is:
Does an intervention that teaches individuation and perspective-taking (IPT) skills to pediatric sickle cell disease (SCD) health care providers (HCPs) enhance patient-centered communication?
Researchers will compare the IPT intervention to a control group who will receive education about SCD pain management to see if the IPT intervention improves patient-centered communication.
Participants will complete baseline surveys and then be randomly assigned into the intervention or control group. After completing their assigned session (IPT training or education), they will be asked to complete the same surveys as completed at baseline.
Detailed description
Research documents poor health outcomes for youth with sickle cell disease (SCD), and interventions for patients and families demonstrate only variable effectiveness. More recent studies have called for interventions targeting health care providers (HCPs) to improve patient health outcomes. The investigators developed and piloted an individuation and perspective-taking (IPT) intervention for pediatric SCD HCPs.
IPT currently consists of one 90-minute virtual training session that incorporates didactic education and practice using the IPT skills in the context of SCD patient stories. After reviewing didactic information about the impact of patient-centered communication on patient health behaviors (e.g., adherence), HCPs are introduced to the two IPT skills and taught how to practice them by changing their communication with patients. HCPs then watch short videos that are publicly available online depicting 3-5 patients with SCD that differ in demographics and symptom presentation. The intervention facilitator uses verbal prompts (e.g., How do the participants think that patient must be feeling?) to assist HCPs in applying the IPT skills to each of these patients. Finally, the facilitator leads a discussion about HCP responses that are and are not consistent with the IPT skills and explores ways HCPs can apply the skills in their clinical practice. This single-session virtual format was well-received and deemed feasible by HCPs in the investigators' formative work, who expressed concerns about attending multiple sessions.
The primary objective is to test the preliminary efficacy of the IPT intervention on improving patient-centered communication in a multi-center sample of pediatric SCD HCPs using a randomized design. HCPs from three medical centers will be randomized to the IPT intervention or to a didactic information control group, completing pre- and post-test measures to assess changed in patient-centered communication.
The investigators hypothesize that the IPT intervention will have positive effects on HCP communication and has the potential to impact patient-reported (e.g., trust, satisfaction with care, and self-efficacy) and clinical health (e.g., pain management, frequency of admission, hydroxyurea adherence) outcomes for adolescents with SCD. Improving HCPs patient-centered communication may increase patients' disease management self-efficacy, thereby improving adherence to preventative measures and reducing the frequency of emergent encounters and hospital admissions.
Study design
- Primary purpose
- Treatment
- Allocation
- Randomised
- Intervention model
- Parallel groups
- Masking
- Single blind (investigator)
- Number of arms
- 2
| Arm | Type | Receives |
|---|---|---|
| Individuation Perspective-Taking (IPT) Intervention | Experimental | Behavioral: Individuation and Perspective-Taking (IPT)Health care provider participants will attend a virtual session presenting the IPT intervention. |
| Educational Control Group | Active comparator | Other: pediatric SCD pain management education sessionHealth care provider participants will attend a virtual presentation on didactic information about best practices in pediatric SCD pain management. |
Who may qualify
- Ages
- 18 years and older
- Sex
- All
- Healthy volunteers
- Accepted
- Age groups
- Adult, Older adult
Key inclusion criteria (2 listed)
- Licensed health care provider (HCP) who provides care to youth with SCD
- HCP employed by Connecticut Children's, Yale New Haven Children's Hospital, or Children's Hospital of Philadelphia and primary work area is Hematology/Oncology
Key exclusion criteria (4 listed)
- HCP who does not provide care to youth with SCD
- HCP is a medical trainee, not including fellows
- HCP not employed by CT Children's, Yale New Haven Children's Hospital, or Children's Hospital of Philadelphia
- Not fluent in English
Eligibility is decided by the study team after screening; this overview does not establish that a patient qualifies. Full inclusion and exclusion criteria.
Interventions
| Intervention | Type | Arms |
|---|---|---|
| Individuation and Perspective-Taking (IPT)IPT currently consists of one 90-minute virtual training session that incorporates didactic education and practice using the IPT skills in the context of SCD patient stories. After reviewing didactic information about the impact of patient-centered communication on patient health behaviors (e.g., adherence), HCPs are introduced to the two IPT skills and taught how to practice them by changing their communication with patients. HCPs then watch short videos that are publicly available online depicting 3-5 patients with SCD that differ in demographics and symptom presentation. The intervention facilitator uses verbal prompts (e.g., How do participants think that patient must be feeling?) to assist HCPs in applying the IPT skills to each of these patients. Finally, the facilitator leads a discussion about HCP responses that are and are not consistent with the IPT skills and explores ways HCPs can apply the skills in their clinical practice. | Behavioural | Individuation Perspective-Taking (IPT) Intervention |
| pediatric SCD pain management education sessionThe SCD pain management education session currently consists of one 90-minute virtual presentation that focuses on best practices in pediatric SCD pain management, including published guidelines from the American Society of Hematology. | Other | Educational Control Group |
Primary outcome
Adapted Measure of Patient-Centered Communication (MPCC)
Time frame: From enrollment to up to 6 weeks post-intervention/control
The adapted Measured of Patient-Centered Communication (MPCC) is an observer-scored set of indices that assesses patient-centered communication during clinic visits. In this adapted version, Individuation and Perspective-Taking are two additional components that will be scored, along with the six components of the Patient-Centered Clinical Method. Each of these components has been operationalized to be reliably scored by independent raters. For each patient video, the participant's communication will be scored for the presence/absence of each of these 8 components. Thus, a given patient video will be summarized using a total score ranging from 0 to 8, with higher scores reflecting greater patient-centered communication. For this study, two independent reviewers (the PI and RA) will score participants' responses to each patient video for the 8 components.
1 secondary outcome
Interpersonal Reactivity Index (IRI)
Time frame: From enrollment to up to 6 weeks post-intervention/control
Results and safety
This study is still under way. Results are not available in the source record yet.
Research links
- Official record on ClinicalTrials.govLast updated by the sponsor 29 Apr 2026.
- Background: PubMed 26490488Maatouk-Burmann B, Ringel N, Spang J, Weiss C, Moltner A, Riemann U, Langewitz W, Schultz JH, Junger J. Improving patient-centered communication: Results of a randomized controlled trial. Patient Educ Couns. 2016 Jan;99(1):117-24. doi: 10.1016/j.pec.2015.08.012. Epub 2015 Aug 14.
- Background: PubMed 23524616Devine PG, Forscher PS, Austin AJ, Cox WT. Long-term reduction in implicit race bias: A prejudice habit-breaking intervention. J Exp Soc Psychol. 2012 Nov;48(6):1267-1278. doi: 10.1016/j.jesp.2012.06.003.
- Background: PubMed 36152000Carlson MM, Bear B, Alderfer MA, Schultz CL, Monroe DP, Crosby LE, Hildenbrand AK. Family-centered communication in pediatric sickle cell disease. Pediatr Blood Cancer. 2022 Dec;69(12):e30016. doi: 10.1002/pbc.30016. Epub 2022 Sep 24.
- Background: PubMed 30636474Badawy SM, Thompson AA, Holl JL, Penedo FJ, Liem RI. Healthcare utilization and hydroxyurea adherence in youth with sickle cell disease. Pediatr Hematol Oncol. 2018 Aug-Sep;35(5-6):297-308. doi: 10.1080/08880018.2018.1505988. Epub 2019 Jan 12.
- Background: PubMed 27761932Quarmyne MO, Dong W, Theodore R, Anand S, Barry V, Adisa O, Buchanan ID, Bost J, Brown RC, Joiner CH, Lane PA. Hydroxyurea effectiveness in children and adolescents with sickle cell anemia: A large retrospective, population-based cohort. Am J Hematol. 2017 Jan;92(1):77-81. doi: 10.1002/ajh.24587. Epub 2016 Nov 18.
- Background: PubMed 24742787Haywood C Jr, Diener-West M, Strouse J, Carroll CP, Bediako S, Lanzkron S, Haythornthwaite J, Onojobi G, Beach MC; IMPORT Investigators; IMPORT Investigators. Perceived discrimination in health care is associated with a greater burden of pain in sickle cell disease. J Pain Symptom Manage. 2014 Nov;48(5):934-43. doi: 10.1016/j.jpainsymman.2014.02.002. Epub 2014 Apr 15.
- Background: PubMed 16483093Labbe E, Herbert D, Haynes J. Physicians' attitude and practices in sickle cell disease pain management. J Palliat Care. 2005 Winter;21(4):246-51.
- Background: PubMed 26136312Haywood C Jr, Williams-Reade J, Rushton C, Beach MC, Geller G. Improving Clinician Attitudes of Respect and Trust for Persons With Sickle Cell Disease. Hosp Pediatr. 2015 Jul;5(7):377-84. doi: 10.1542/hpeds.2014-0171.
- Background: PubMed 21141297Campbell AD, Ross PT, Kumagai AK, Christner JG, Lypson ML. Coming of age with sickle cell disease and the role of patient as teacher. J Natl Med Assoc. 2010 Nov;102(11):1073-8. doi: 10.1016/s0027-9684(15)30735-5.
- Background: PubMed 24224021Darbari DS, Wang Z, Kwak M, Hildesheim M, Nichols J, Allen D, Seamon C, Peters-Lawrence M, Conrey A, Hall MK, Kato GJ, Taylor JG 6th. Severe painful vaso-occlusive crises and mortality in a contemporary adult sickle cell anemia cohort study. PLoS One. 2013 Nov 5;8(11):e79923. doi: 10.1371/journal.pone.0079923. eCollection 2013.
- Background: PubMed 33617594Kidwell K, Albo C, Pope M, Bowman L, Xu H, Wells L, Barrett N, Patel N, Allison A, Kutlar A. Characteristics of sickle cell patients with frequent emergency department visits and hospitalizations. PLoS One. 2021 Feb 22;16(2):e0247324. doi: 10.1371/journal.pone.0247324. eCollection 2021.
- Background: PubMed 30251318Kayle M, Docherty SL, Sloane R, Tanabe P, Maslow G, Pan W, Shah N. Transition to adult care in sickle cell disease: A longitudinal study of clinical characteristics and disease severity. Pediatr Blood Cancer. 2019 Jan;66(1):e27463. doi: 10.1002/pbc.27463. Epub 2018 Sep 24.
- Individual participant dataSharing planned: No. Data will be aggregated for all study analyses.
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Referral and contact
AzTrials does not enrol participants or take referrals. Contact the study team or a site listed below; they decide who can take part.
Siddika Mulchan, PsyD principal investigator
Connecticut Children's Medical Center
1 site in 1 country: see every site and its status.
Questions about this trial
What is this clinical trial studying?
A study testing Individuation and Perspective-Taking (IPT) and pediatric SCD pain management education session in people with Sickle Cell Disease and Sickle Cell Anemia in Children, run by Connecticut Children's Medical Center at 1 site in United States.
The full registered description is in the About this study section and the official record.
Who may be eligible to take part?
The sponsor lists 2 inclusion and 4 exclusion criteria. Eligibility is decided by the study team after screening, so read the full criteria and contact a listed site.
Is this clinical trial currently recruiting?
The record says: opening soon, as of the sponsor's last update on 29 Apr 2026. Status can change between updates, so confirm with the study contact before making plans.
Where is the study taking place?
The record lists 1 site in United States. Whether a site is taking part right now should be confirmed with that site. See every site.
What are the possible benefits and risks?
They depend on the study and the treatment, and no study can promise a benefit. The study team explains the known risks during informed consent, before anyone joins; the record itself does not list them.
Are results available for this study?
This study is still under way. Results are not available in the source record yet.
How can a doctor refer a patient or contact the research team?
Contact Siddika Mulchan, PsyD (860-545-8122, smulchan@connecticutchildrens.org), or a site near the patient. AzTrials does not enrol participants or take referrals.
What does the primary outcome measure?
Adapted Measure of Patient-Centered Communication (MPCC) (time frame: From enrollment to up to 6 weeks post-intervention/control). It is what the study was designed to measure, not a finding.
Where can I read the original study information?
On the ClinicalTrials.gov record for NCT07540767, which also lists 26 linked publications.
Does a listing mean the treatment is approved or proven to work?
No. A listing means the study is registered. It does not show that the treatment is safe, works, or is approved by a regulator.
How often is this information updated?
AzTrials copies changed records from ClinicalTrials.gov every night and reloads the whole registry every week. The sponsor last updated this record on 29 Apr 2026.