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| ID | Type | Description | Link |
|---|---|---|---|
| NCI-2023-08916 | Registry Identifier | NCI Clinical Trial Registration Program |
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There is a pressing need to measure patient-reported symptoms in patients of all ages diagnosed with nodular lymphocyte-predominant Hodgkin lymphoma (NLPHL). This study aims to measure longitudinal symptom burden and treatment tolerability utilizing validated patient-reported outcomes (PROs) instruments.
Primary Objective:
Secondary Objective:
The broad aim of this study is to develop the foundational data management infrastructure required to prospectively collect longitudinal electronic patient-reported outcomes (PROs) survey instruments in adult and pediatric patients diagnosed with nodular lymphocyte-predominant Hodgkin lymphoma (NLPHL). The study team further aims to elucidate how PROs change over time and how they may be affected by different patient, disease, and treatment characteristics.
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| Measure | Description | Time Frame |
|---|---|---|
| Estimates of response rates | Percentage of survey completion at different timepoints | At baseline, 3, 6, 9, and 12 months |
| Patterns of individual per-patient survey completion | Patterns of individual per-patient survey completion will be described. Non-responders, late responders, and patients with suboptimal item completion rates who require real-time outreach will be queried for individual challenges in completing PRO surveys for iterative improvements to infrastructure. | At baseline, 3, 6, 9, and 12 months |
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Inclusion Criteria
Exclusion Criteria
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Patients that meet eligibility
| Name | Role | Phone | Extension | |
|---|---|---|---|---|
| Valerie Crabtree, PhD | Contact | 888-226-4343 | referralinfo@stjude.org | |
| Jessi Rogers Blake, BSN,RN,CCRP | Contact | 901-595-4108 | jessi.rogers-blake@stjude.org |
| Name | Affiliation | Role |
|---|---|---|
| Valerie Crabtree, PhD | St. Jude Children's Research Hospital | Principal Investigator |
| Ajay Major, MD, MBA | University of Colorado, Denver | Principal Investigator |
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| Stanford University Medical Center | Recruiting | Palo Alto | California | 94304 | United States |
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| Label | URL |
|---|---|
| St. Jude Children's Research Hospital | View source |
| Clinical Trials Open at St. Jude | View source |
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| Anna Jones, PhD |
| St. Jude Children's Research Hospital |
| Principal Investigator |
| Matthew Rees, MD | St. Jude Children's Research Hospital | Principal Investigator |
| Jamie Flerlage, MD, MS | University of Rochester | Principal Investigator |
| University of Colorado Hospital | Recruiting | Aurora | Colorado | 80045 | United States |
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| Dana-Farber Cancer Institute | Recruiting | Boston | Massachusetts | 02215 | United States |
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| Hackensack University Medical Center | Recruiting | Hackensack | New Jersey | 08837 | United States |
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| Memorial Sloan Kettering Cancer Center | Recruiting | New York | New York | 10065 | United States |
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| University of Rochester Medical Center | Recruiting | Rochester | New York | 14642 | United States |
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| St. Jude Children's Research Hospital | Recruiting | Memphis | Tennessee | 38105 | United States |
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| ID | Term |
|---|---|
| D006689 | Hodgkin Disease |
| ID | Term |
|---|---|
| D008223 | Lymphoma |
| D009370 | Neoplasms by Histologic Type |
| D009369 | Neoplasms |
| D008232 | Lymphoproliferative Disorders |
| D008206 | Lymphatic Diseases |
| D006425 | Hemic and Lymphatic Diseases |
| D007160 | Immunoproliferative Disorders |
| D007154 | Immune System Diseases |
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