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Focus on Rhabdo - Rhabdomyosarcoma (RMS) Biospecimen International Tissue Donation Program

Bio-Specimen Donation
Bio-Specimen Donation Process


If you can provide a tissue sample for research, it is essential to do so -
and notify other RMS families that tissue donation is an important
option during many surgical procedures. There are no costs incurred by
the family to donate these critical tissue samples.

Research on live cancer tissues speeds the creation of cures. The donation of living RMS tissue is needed to create treatments and cures.

This effort was initiated by the families of RMS cancer patients. Many patients and their families are unaware of the need to donate RMS tissue for research. If you have the ability to provide a tissue sample for research, it is essential to do so - and then also to notify other RMS families and oncologists that tissue donation is an needed during certain surgical procedures.

Currently, the lack of research specimens is hindering the study of the disease. Living cancerous tissue is required to understand the underlying biochemical mechanisms that cause the cancer, and then to test new treatment protocols. Donating tissue directly to RMS researchers is a proactive way to further cure development. Correctly donated RMS tissue helps researchers find new and better treatments for patients suffering from the disease. This tissue must be donated in the correct manner to be useful in research efforts. The creation of high quality RMS tissue banks (also known as “biobanks”) is essential for the study of RMS such that a cure can be found. The FocusOnRhabdo (FoR) tissue donation program exists to enable rhabdo families to donate tissue samples to participating labs that can receive and process the sample for study.

  • This program does not cost anything to the donating rhabdo family.
  • Tissue samples will sent directly to RMS researchers and will be used to study the biology of rhabdomyosarcoma
  • Donated tissue will also be grown and distributed to other rhabdo researchers for study and then to the Children's Oncology Group (COG)
  • Research on donated RMS tissue will produce research papers that will increase the scientific knowledge required to make new treatments and cures

How to Donate

Many surgical procedures involving RMS can support the collection of a bio-specimens for research in addition to the tissue collected for medical diagnostic purposes, including:

  • Surgical Biopsies
  • Tumor Removal/Resection/Debulking Procedures
  • Exploratory Surgery
  • Amputations
  • Preplanned Autopsies

Donating RMS tissue under this program is summarized below:

  • Recognize when a surgical procedure may result in an opportunity to collect a research sample.(See above list of procedures)
  • Notify the medical/surgical team that you desire to collect and ship a sample if the opportunity presents itself.
  • Using the list of collaborating laboratories and in concert with your oncology team, choose a laboratory to receive the sample.
  • It is essential that your oncology team make contact with the laboratory and abide by their material transfer protocols.
  • Remind the doctors about the tissue donation during any discussions of the surgery and ask if they have successfully made contact with the laboratory.
  • Ensure bio-specimen has been sent by the hospital and then received by the lab.
  • If you have additional questions, or need further assistance, contact Todd Paulsen, Chair, FocusOnRhabdo Bio-Specimen Donation Initiative, at toddpaulsen@gmail.com

The surgical team must be notified prior to the surgery of the intent to provide a tissue sample for research if it is medically possible. It is best to notify the doctors as early as possible for planning and coordination purposes. Most often, the hospital has the ability to send the bio-samples where they need to go without the family’s involvement past the initial request. The donating family will not receive any medical advice or diagnostic information from the donation, but will receive a notification that the lab received the tissue.

Participating Laboratories

The laboratories on this list research rhabdomyosarcoma specifically, and have agreed to participate in this program. These labs are bound together by a memorandum of understanding (MOU) regarding the intended use of the RMS tissue donated under this program. When donated RMS tissue is received, the laboratories will attempt to culture the tissue and get it to grow. If a live culture of RMS tissue is created from the donation - the lab will then send a portion of the propagated cells to at least three other laboratories within a specified time-frame - and then to the Children's Oncology Group. At the COG, the tissue sample will typically marry up with the patient’s HIPAA-protected medical treatment history for other forms of research (e.g. archival RMS survival studies). In this way, living RMS tissue has the greatest mobility for research purposes; improving the breadth, quality, and quantity of RMS-specific research; increasing understanding of rhabdo biochemistry; is given directly to those working on rhabdo cures (bypassing bureaucratic hurdles); and spreads out, lab-to-lab, at an accelerated pace. As rhabdo families, this one of the most powerful tools we have to combat the disease – and the one we have direct control over.


This list is being constantly updated with new laboratories and contact information. Please refer to the list just prior to making your laboratory decision.

United States - West Coast

Children's Cancer Therapy Development Institute

Dr. Charles Keller
cc-TDI
12655 SW Beaverdam RD W,
Beaverton, OR 97005
Email: charles@cc-tdi.org
Tel: (801) 232-8038

University of Washington - Department of Pathology

Dr. Eleanor Chen
University of Washington, Department of Pathology
1959 N.E. Pacific St.
HSB Room K084
Seattle, WA 98195
Email: eleanor2@u.washington.edu
Office Phone: 206-616-5062
Lab Phone: 206-616-9118

United States - Central

Center for Childhood Cancer and Blood Diseases

Dr. Peter Houghton
Nationwide Children's Hospital
Columbus, Ohio
Email: Peter.Houghton@nationwidechildrens.org

Southern Illinios University School of Medicine

Dr. Judy Davie
Southern Illinois University School of Medicine
Email: jdavie@siumed.edu
Tel: (618) 453-5002

United States - East Coast

Roswell Park Cancer Institute

Dr. Asoke Mal
Roswell Park Cancer Institute
Elm & Carlton Streets
Buffalo, New York 14263
Email: Asoke.Mal@RoswellPark.org

Send Samples To:
Munmun Mal
Dept. of Cell Stress Biology
BLSC-L3-126
Roswell Park Cancer Institute
Elm & Carlton Streets
Buffalo, NY 14263
Ph.: (716) 845-4758
Email: munmun.mal@roswellpark.org

Europe - UK

Shipley Lab - The Institute of Cancer Research - (London, UK)

Dr. Janet Shipley
The Institute of Cancer Research
123 Old Brompton Road
London SW7 3RP
Tel: 020 8722 4273
Email: Janet.Shipley@icr.ac.uk

Europe - Germany

Gottingen Graduate School for Neurosciences, Biophysics, and Molecular Biosciences (Gottingen, Germany)

Dr. Heidi Hahn
GGNB
Justus-von-Liebig-Weg 11
37077 Göttingen
Germany
Tel: +49-(0)551-39 14010
Email: hhahn@gwdg.de

University Children's Hospital Divisions of Oncology (Zurich, Germany)

Dr. Beat Shaefer
University Children's Hospital
Divisions of Clinical Chemistry and Oncology
Steinwiesstrasse 75
City 8032 Zürich
Email: Beat.Schaefer@kispi.uzh.ch
Tel: +41-44-266 75 53

Simone Hettmer Lab

Dr. Simone Hettmer
Charité - Universitaetsmedizin Berlin
Otto-Heubner Centrum fuer Kinder- und Jugendmedizin
Augustenburger Platz 1
13353 Berlin
Germany
Tel: 0176-30651118
Email: simone.hettmer@charite.de

Europe - Italy

Alessandro Fanzani Lab (Brescia, Italy)

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Alessandro Fanzani, PhD
Department of Molecular and Translational Medicine,
Viale Europa 11, University of Brescia,25123 Italy
Tel. +39-030-3717567

Department of Molecular and Translational Medicine,
Viale Europa 11, University of Brescia,25123 Italy
Email: fiorella.faggi@med.unibs.it
Tel. +39-030-3717568

Rota Lab (Rome, Italy

Dr. Rossella Rota
Research Laboratories
Ospedale Pediatrico Bambino Gesu'

Pad. GPII
P.zza S. Onofrio 4
00165 Roma - Italy
Tel:+39 (06) 6859.2648 office
Fax:+39 (06) 6859.2904
rossella.rota@opbg.net