Clinical Tumor Board
Expert Clinical Guidance for Cancer in Bloom Syndrome
Cancer is one of the most serious and complex challenges faced by individuals with Bloom syndrome. Because Bloom syndrome is rare and individuals may have unique sensitivities to some standard cancer treatments, patients and physicians often face difficult decisions with limited condition-specific evidence.
To help address this need, the Bloom Syndrome Association provides information about Clinical Tumor Board review for Bloom syndrome cancer cases and about separate opportunities to contribute cancer-related information to the International Bloom Syndrome Registry (IBSR) for research. Clinical Tumor Board submission instructions are available through UCLA Health’s Multidisciplinary Bloom Syndrome Clinic.
The Clinical Tumor Board is intended to support treating clinicians as they consider complex cancer care questions. It does not replace the treating physician’s medical judgment, and it does not establish a physician-patient relationship between the Tumor Board members and the patient.
Two Related but Distinct Efforts
Cancer care in Bloom syndrome requires both immediate clinical support and long-term learning. These efforts are related, but they are not the same.
The Clinical Tumor Board is intended to support a treating clinician who is facing a current or recent cancer care question for an individual patient. It may help the care team think through Bloom syndrome-specific issues such as treatment sensitivity, radiation concerns, relapse, transplant, surveillance after diagnosis, or management of treatment-related complications. The treating clinician remains responsible for medical decisions.
The Tumor Review Board is part of the IBSR research learning system. It does not provide medical advice or treatment recommendations. Instead, when appropriate consent and governance are in place, it reviews cancer-related information contributed to the IBSR to help researchers understand patterns across cases, including tumor type, age at diagnosis, genetic findings, surveillance history, treatments, side effects, response, recurrence, and outcomes.
Together, these efforts support a “care today, learning for tomorrow” model: the Clinical Tumor Board can help clinicians think through difficult individual cases, while the IBSR and Tumor Review Board help ensure that lessons from rare cancer experiences are not lost.
How It Works
Clinical Tumor Board discussions may include specialists in:
- Pediatric and adult oncology
- Clinical genetics and genomic medicine
- Radiation oncology
- Cancer predisposition syndromes
- Bloom syndrome clinical care
- Other experts as needed
A treating clinician may seek Clinical Tumor Board discussion for cases involving:
- New cancer diagnoses
- Questions about treatment regimens
- Challenges with surveillance, recurrence, or progression
- Management of treatment-related complications
- Questions related to Bloom syndrome-specific treatment sensitivity
Clinical Consultation is Separate from ISBR Participation
A clinician may seek Clinical Tumor Board input for a patient with Bloom syndrome whether or not that patient is enrolled in the IBSR. The goal of the Clinical Tumor Board is to support patients and their medical teams in real time, regardless of whether they choose to participate in research.
Patients, families, and clinicians may also request information about the IBSR if they are interested in contributing cancer-related information to research. Enrollment in the IBSR is voluntary.
Contributing Cancer Information to the IBSR
Because Bloom syndrome is so rare, every cancer experience can help build knowledge that may benefit the community over time. Without contributed cancer data, experts can only learn from isolated cases. When patients and families choose to contribute cancer-related information to the IBSR, those experiences can be reviewed in a structured, privacy-protective way to help identify patterns in surveillance, treatment tolerance, side effects, response, recurrence, and outcomes.
Cancer-related information contributed to the IBSR may include:
- Cancer diagnosis and type
- Pathology or molecular testing information
- Treatments received
- Dose modifications or treatment sensitivities
- Side effects or toxicities
- Response to treatment
- Recurrence or outcome information
- A structured case summary or discussion summary, where available
Clinical Tumor Board case information, materials, or discussion summaries will not be entered into the IBSR unless the patient, parent/LAR, or other authorized representative has enrolled in the IBSR and provided the required optional consent.
Once information is entered into the IBSR, it is governed by the IBSR protocol, privacy protections, consent choices, and Registry Advisory Board review process. Over time, this shared learning may help inform future surveillance strategies, research priorities, treatment considerations, publications, and care guidelines for Bloom syndrome.
Tumor Review Board for Research and Learning
The IBSR uses a Tumor Review Board for research and learning purposes. The Tumor Review Board is different from the Clinical Tumor Board.
The Clinical Tumor Board focuses on an individual clinical question. The Tumor Review Board focuses on what can be learned across cases that have been contributed to the IBSR with appropriate consent and oversight. The Tumor Review Board may review cancer-related information already entered into the IBSR to help identify patterns in cancer diagnosis, surveillance, treatment, side effects, response, recurrence, and outcomes among individuals with Bloom syndrome.
The Tumor Review Board is for research and learning. It does not provide medical advice, clinical consultation, or treatment recommendations. This work is intended to support research, future guidelines, and better-informed care over time.
Submitting a Case for Clinical Discussion
The Clinical Tumor Board submission process is managed through UCLA Health’s Multidisciplinary Bloom Syndrome Clinic in conjunction with Cambridge University. Clinicians, patients, or families who would like information about submitting a Bloom syndrome cancer case for Clinical Tumor Board discussion should visit UCLA Health’s Bloom Syndrome Clinic webpage for current submission instructions:
Please follow the submission instructions provided by UCLA Health. Supporting materials may include clinical summaries, genetic information, histology/pathology reports, imaging summaries, treatment protocols, or other relevant medical information.
Patients, families, and clinicians should feel free to contact the IBSR study staff with any questions about the IBSR or for help in connecting with the Clinical Tumor Board.
Data Security and Confidentiality
Clinical Tumor Board case materials should be submitted according to the secure submission instructions provided by UCLA Health. Cases are reviewed in a secure environment, and access to case material is limited to authorized Clinical Tumor Board participants and appropriate staff.
Clinical Tumor Board participation does not require enrollment in the IBSR. If a patient also chooses to contribute information to the IBSR, that information will be handled according to the IBSR consent, protocol, privacy protections, and Registry Advisory Board oversight process.
How to Engage
Families: If there is an active cancer case, ask your treating physician whether Bloom syndrome-specific expert input may be helpful. Clinical Tumor Board submission instructions are available through UCLA Health’s Multidisciplinary Bloom Syndrome Clinic webpage. Families may also enroll in the IBSR and choose whether to contribute cancer-related information for research.
Clinicians: For Clinical Tumor Board submission instructions, please visit UCLA Health’s Multidisciplinary Bloom Syndrome Clinic webpage. Clinicians may also help patients and families contribute structured cancer-related information to the IBSR, where appropriate.
Researchers: The IBSR’s cancer-related data may help define common data elements, outcomes, surveillance questions, and future research priorities across centers.
What This Enables
Clinical coordination: a defined path for treating physicians to access Bloom syndrome-specific expertise.
Case-based learning: lessons from rare cancers are not lost in isolated clinics or family experiences.
Surveillance refinement: identification of practice variation, missed opportunities, and future consensus needs.
Therapeutic readiness: a stronger clinical evidence base for treatment considerations, research endpoints, and future guidelines.
Care today -> Learning system -> Better-informed care tomorrow.
Contact Us
For questions about contributing cancer-related information to the International Bloom Syndrome Registry, please contact: ibsr@bloomsyndromeassociation.org.
Visit the International Bloom Syndrome Registry at: https://bloomsyndromeregistry.org
For Clinical Tumor Board submission instructions, please visit UCLA Health’s Multidisciplinary Bloom Syndrome Clinic webpage:
Other Support
- The Bloom Syndrome Association (BSA) is here to support and wants to understand your experience and any challenges you face in receiving the best care available.
Facebook Community Group
- The BSA maintains a closed group on Facebook. Ask questions to the group about your experience, and lean on us for support.
About the Hesch Hope Project
The BSA’s work to help families access Bloom syndrome cancer expertise and contribute cancer-related information to research is part of the Hesch Hope Project, an initiative inspired by the life of Jason Hesch, a beloved member of the Bloom syndrome community. Jason was a warm, funny, and determined young man who faced multiple cancer diagnoses throughout his life with extraordinary courage. In the final stages of his care, Jason and his family encountered significant challenges navigating complex treatment decisions and accessing expert guidance tailored to the unique needs of individuals with Bloom syndrome. His story highlighted the critical need for a coordinated approach to cancer care in our community.
In his memory, the Bloom Syndrome Association launched the Hesch Hope Project to help ensure that no family has to face such challenges alone. Thanks to generous donations from families, friends, and supporters across the world, this project supports the BSA’s cancer-related resources and research efforts. We are deeply grateful to all those who contributed and continue to support this work.
Jason’s legacy lives on through each effort to support families and clinicians facing complex cancer decisions in Bloom syndrome. His experience has become a guiding force in our mission to support expert, compassionate, and collaborative cancer care for all members of the global Bloom syndrome community.
Just as the initial diagnosis of Bloom syndrome can be intimidating, we know a cancer diagnosis can be overwhelming and frightening. It’s important to know that, while Bloom syndrome cancers can be particularly challenging, many in our community have survived one, two, even more than a handful of cancers! We are here for you to provide information and also to provide emotional support.
When cancer strikes, it’s important to develop an integrated care team including your oncologist, the Bloom Syndrome Registry, and YOU!