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
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. We do NOT pay for upgrades, change fees, incurred costs resulting from a flight change, transportation to or from your local (home side) airport, meals or other incidentals.
- Travel Confirmation will be sent out within 1 week of the meeting. 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 meeting.
- 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.
- REMINDER: We do not reimburse for home side airport transfer or incidentals while traveling. We will not honor miscellaneous receipts sent for these expenses.
- Spouses are welcome to come with you at their own cost but are not allowed to attend the meeting. Please no children.
What the Foundation Pays
Accommodations and meals are provided by the foundation during the meeting. Airfare will be covered only if booked through our travel agent. The Foundation will also cover airport transportation on the meeting side at the designated shuttle times. You can select not to utilize Foundation arranged transportation at your own expense when completing the travel form. Once your travel form is received your accommodations and airport transfer will be confirmed. Please let us know of any food allergies or other information we should be aware of on the travel forms.
- If you would like your airfare covered by the Foundation, you must book with our travel agent. Note we do not cover upgrades, changes, late bookings, etc.
- Flights must be booked at least 30 days prior to the meeting to confirm your accommodations and airport transfer.
- As a nonprofit we utilize volunteers and other methods to maximize our efforts (or our donor support) when making accommodations and arranging ground transportation. Ground transportation will be provided upon your arrival either by a foundation volunteer or arranged shuttle. You will be provided airport transportation information the week of the meeting. We do not reimburse for home side airport transfer or incidentals while traveling.
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.
Meeting Structure
The meeting structure 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 5 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. Handouts are welcome but should be distributed before sessions.
- Everyone is expected to actively participate in every session and discussions.
- The time spent at the meeting is relatively short, so please be familiar with papers received prior to the meeting.
- It is very important that you commit to all sessions of the 2 days of meetings.
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 meeting 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 meeting. 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 meeting.
- 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.
- REMINDER: We do not reimburse for home side airport transfer or incidentals while traveling. We will not honor miscellaneous receipts sent for these expenses.