Renal Medullary Carcinoma
Forum Chairs
Forum Description
Renal medullary carcinoma (RMC) is an orphan cancer of the kidney occurring in an exclusive population of adolescent and young adults who carry the sickle cell hemoglobin gene. This unusual and fascinating cancer is highly aggressive, and carries a high mortality associated with it's incidence. The true prevalence of the disease is unknown due to challenges in diagnosis, and the lack of effective reporting tools. Various therapies have been investigated in very small series—including multi-agent chemotherapy and various targeted therapies, but without consensus. We are gathering a group of interested investigators to examine this disease in detail from a variety of perspectives. Over the course of two days we aim to examine the epidemiology, pathology, genetics, biology, and treatment of this disease. It seems that in an era of expanded genomic capabilities, and increasing world-wide connectedness that the time is ripe to make substantive advancements in providing consistent precision based treatment to these patients. However, thoughtful consideration should be devoted to how best to achieve these endeavors. Major goals of this focus meeting will be threefold
- To start a conversation about this cancer and begin to establish standards and guidelines around RMC disease management.
- To give voice to a community of patients, families, caregivers, and physician providers who are often isolated and in need of information for complex decision-making.
- To develop the plans for a consortium-based repository for data and tissue, and for the conduct of clinical trials. We will plan to submit a “white paper” that summarizes the state of the field for RMC, and we hope and anticipate that this is only the first of many meetings devoted to the topic of renal medullary carcinoma.
Forum Summary
Similar to the original meeting organized by the Forbeck Foundation just over 30 years ago, this year's Forbeck Focus Meeting tackled a rare cancer disorder, Renal Medullary Carcinoma (RMC). This cancer disproportionately affects teens and young adults who are also carriers of the sickle hemoglobin gene, or other hemoglobinopathies. The cancer originates in the kidney, and is rapidly progressive, and almost universally fatal. Because of the rarity of this cancer, even the overall incidence is not known, and little community discussion exists around its underlying biology, etiology, or standards for treatment.
This meeting brought together a panel of international experts in the diverse fields that encounter this disease: pediatric and adult hematologists specializing in hemoglobinopathy, pediatric and adult medical oncologists, urologists, pathologists, nephrologists, and genome scientists. Together the group worked to define the issues that complicate the diagnosis, and established a working set of definitions for this disease. The group tackled existing database repositories, and the reasons why these patients are not all being accounted for and not currently being included in greater numbers. In addition, it became evident that the incidence is very hard to measure with present methodologies. The group explored the unique environment of the kidney and the genetic association with sickled hemoglobin, in both the heterozygous sickle cell trait scenario, and in the setting of sickle cell disease. We examined the emerging biology that is developing for the classical form, and considered the past experience with chemotherapy and surgery in the context of a new clinical trial designed to test a EZH2 inhibitor. This treatment option has a strong rationale that has emerged from the investigations around SMARCB1 inactivation occurring in the majority of cases.
The outcome of the meeting was measured first in the development of relationships between investigators around the world who came to renal medullary carcinoma with a diverse set of interests, but who are united in their determination to improve the outcome for children, young adults, and families facing this cancer. A consensus review article is being drafted and has been invited by a prestigious journal in the field. Most importantly, we committed to a series of tasks to elevate the visibility of this disease, to raise awareness regarding its diagnosis and treatment among physicians, to collectively share our experience in an international registry, a unified commitment to collect tumor specimens for cell line development, enroll patients into existing databases as well as the international registry, and to eventually network around a shared tumor bank and clinical trails/access program. When we meet again in 2017 it will be as the RMC Alliance, and between now and then we hope to increase awareness through our advocates, be able to report positive results of the first clinical trial in this disease and have developed a clinical trails referral network, have firmly established the diagnostic criteria for RMC, and have established a registry and the start of a tumor bank to allow more advanced studies of the epidemiology, biology, and best practices for management of these patients.
Venue & Travel Information
CONFIRM YOUR ATTENDANCE
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We look forward to your participation in this impactful and inspiring event!
Travel Forms
Please familiarize yourself with our travel policy below before booking your travel. If you have any questions about our policy, please do not hesitate to contact us for clarification.
IMPORTANT INFORMATION ABOUT GROUND TRANSPORTATION
To maximize funding for our Forums, the Foundation does not reimburse ground transportation costs outside the designated shuttle pick-up times. If you arrive after the final shuttle, or do not wish to wait for or take a scheduled shuttle, you will be responsible for arranging and covering your own transportation to the Forum venue.
Travel Policy & General Information
Travel Policy
Please familiarize yourself with our policies and procedures for travel. We truly appreciate you taking the time to participate in this meeting. As you make your plans please remember that we are a nonprofit organization dependent on donations and volunteers. So please note what we do and do not cover.
What the Foundation Pays For
- ACCOMMODATIONS for the nights of the Forum only. People traveling from oversees or far away may arrive 1 night early to adjust for jet lag or to navigate longer travel times.
- MEALS are provided by the foundation during the forum.
- A TRAVEL ALLOWANCE FOR AIRFARE will be set based on an economy ticket from your home airport. If you have travel before or after that is fine. We do not increase the allowance for other travel plans.
- The Foundation provides SHUTTLES TO/FROM THE AIRPORT to the meeting venue at designated shuttle times.
- You can select not to utilize Foundation arranged transportation at your own expense when completing the travel form.
What the Foundation does not cover
- We do not cover upgrades of any kind.
- Travel Allowance will not be increased due to late booking or changes.
- We do not cover incidental costs during your travel. So please do not send your food receipts.
- We do not cover additional nights at the venue outside of the meeting dates.
- We do not cover transportation outside of the designated shuttle times.
- We do not reimburse for home side airport transfer (to/from your home/office to your airport).
Important Things to Note
- Everyone must fill out the travel form!
- We must have your itinerary and travel receipt to receive reimbursement.
- Flights must be booked at least 30 days prior to the meeting or you may not have accommodations and airport transfer.
- We often use volunteers for airport transfers.
- The travel confirmation will be sent out the WEEK before your Forum.
- The speaking agenda will be spent out the NIGHT before your Forum.
- We expect participants to attend ALL sessions.
Frequently Asked Questions
- Travel Confirmation will be sent out with in 1 week of the meeting. This will include a hotel confirmation number, if there is one, airport transfer details. We have to wait until we receive almost everyone’s travel to book airport transfer. Also due to frequent airline changes we wait until the week of the meeting to send this out.
- Speaker agenda is not sent out prior to the meeting. It will be provided upon arrival in the meeting packet. We do not tell people when they are speaking because we expect everyone to attend all sessions. Sessions are all day Friday and Saturday.
- Frequently airport transfer is provided by volunteers. Please be patient on receiving this information. Airport transfer will be sent out prior to arrival.
Abstracts
Abstracts are due 30 days prior to the start of the meeting to allow enough time to prepare the meeting book.
The abstracts should be only one or two paragraphs outlining the theme of your presentation and should reflect the objective and spirit of the meeting (see above). Abstracts will be circulated about one week before the meeting. The meeting organizer will start requesting them a month before the meeting.
Forum Structure
The structure of the forum has been developed over years of experience.
- Participants have approximately 45 minutes, depending on the number of participants, for their presentation and discussion. The presentation is meant as a conversation start and should last about twenty minutes briefly covering background information and areas that are new or need further input. This should be structured in such a way as to lead to a lively discussion. Participants are encouraged to interrupt to ask questions or start discussions.
- A MAXIMUM of 2 slide equivalents per presentation is allowed (Power point slides should not contain more than one graph or gel per slide and no more than 5 bullet points to stress the points being made by the presenter.) We appreciate cooperation with the spirit of this guideline.
- A Whiteboard and markers will be available to supplement your digital slides.
- Everyone is expected to actively participate in every session and discussions.
- The time spent at the forum is relatively short, so please be familiar with papers received prior to arrival.
- It is very important that you commit to all sessions of the 2 days of the forum.
Forbeck Scholars Participation
Scholars are selected for each Forbeck Forum. These are outstanding junior clinical or post-doctoral fellows selected based on the quality and relevance of science.
- Scholars present for 30-45 minutes, depending on the number of participants
- The same presentation rules apply for scholars
- After the Forum you are selected to attend, you will attend three years of Scholar Retreats held in Lake Geneva, WI. If you attend a Fall Forum, you will attend the Spring Retreat. If you attend a Spring Forum you will attend a Fall Retreat.
- Scholars are selected by the Foundation Scientific Advisory Board and peer reviewers selected from past Forbeck Scholars.
General Program
The outline below illustrates a typical program schedule. You will receive a complete schedule, including speaking times, the Thursday the forum starts.
Frequently Asked Questions
Below are some of our most Frequently Asked Questions. If you have something new to ask, please feel free to contact us.
- Travel Confirmation will be sent out within 1 week of the forum. This will include a hotel confirmation number, if there is one, and airport transfer details. We have to wait until we receive almost everyone’s travel to book airport transfer. Due to frequent airline changes, we wait until the week of the meeting to send this out.
- Airport transfer is provided by Foundation staff, volunteers or arranged shuttle at specific times. If you opt to utilize Foundation airport transportation on your travel form, please be patient in receiving this information. We will send it to the week of the forum.
- Speaker agenda is not sent out prior to the meeting. It will be provided upon arrival in the meeting packet. We do not tell people when they are speaking because we expect everyone to attend all sessions. Sessions are all day.
- Frequently airport transfer is provided by volunteers. Please be patient on receiving this information. Airport transfer will be sent out prior to arrival.
- REMINDER: We do not reimburse for home side airport transfer or incidentals while traveling. We will not honor miscellaneous receipts sent for these expenses.