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BMT Resources

Books

Pediatric Hematopoietic Stem Cell Transplantation

Edited by Ronald M. Kline. 640 pp., illustrated. New York, Informa Healthcare, 2006. $229.95. ISBN 978-0-8247-2445-0. Reviewed in the June 14, 2007 issue of the NEJM.

Web Sites, organized by site

Blood & Marrow Transplant Information Network (BMT InfoNet)

formerly BMT Newsletter
web site: http://www.bmtinfonet.org/
phone: 1-888-597-7674

An excellent resource. What the site has to offer:

Books, such as:
Bone Marrow and Blood Stem Cell Transplants: A Guide for Patients (2002).
The previous version of the above book is Bone Marrow Transplants. This original version is available both online and in printed form. This guide discusses procedures, HLA typing, blood cell production, what the patient feels, emotional issues, etc., including a pediatric section.
Autologous Stem Cell Transplants: A Handbook for Patients (2000)

Newsletters. A quarterly newsletter for bone marrow, peripheral blood stem cell and cord blood transplant patients and survivors. Archives of past articles.

Helpful Services, such as:

Patient-to-Survivor Link: Matches patients who are about to undergo a bone marrow, peripheral blood stem cell or cord blood transplant with survivors who are willing to provide emotional support.
Help With Insurance Difficulties: For patients having difficulty securing insurance reimbursement for a bone marrow, peripheral blood stem cell or cord blood transplant.

Transplant Center Search Form: Directory of transplant centers in the US and Canada.

Drug Database: Lists many of the drugs used in transplants - why they are used and some possible side effects.

National Cancer Institute

Blood Stem Cell Transplants on the cancer.gov website.

A slide show on blood stem cell transplants. Educational, posted on the cancer.gov site 9/06.

National Marrow Donor Program (NMDP)

website: http://www.marrow.org/
1-800-MARROW2 (1-800-627-7692)

Great information and helps on finding a matching donor. Has a section on childhood BMTs. This site (and the organization via media) also encourages people to join the registry as potential donors, and tells people exactly how they can join the registry and how the costs in so doing can be defrayed. It also has general information on transplantation, and links to the bmtinfo site for more detailed information.

What the site has to offer:

Donor Information. What it involves, how it feels to donate, where to donate, etc.
Patient Information. Some of the information is quite general, but on the Q&As page, there are links to the bmtinfo site which explain HLA typing, histocompatability, history of BMTs, cord blood transplants, etc.
Online donor search tool to count matches of your six HLA types.
Cord Blood FAQs.
Patient Stories.
Office of Patient Advocacy. Help in finding donors for allogeneic transplants.
Insurance coverage information.
TC access directory. Lists and compares transplant centers.

The Bone Marrow Foundation (BMF)

web site: http://www.bonemarrow.org/
phone: 1-800-365-1336

The BMF raises awareness of the need for bone marrow donors. It also helps patients who need transplants by providing financial aid, a resource directory, a literature search page, and support line and an ask the expert page.

Patient Aid. Direct funding of $1000 to qualified applicants. Assistance in donor search, compatibility testing, cord blood banking, sperm banking, medication, medical supplies, home/child care, transportation, accommodations, lega fees, insurance premiums, approved living expenses.
Resource directory. Contact information and/or web links to financial aid, bone marrow searches, insurance problems, fundraising, books on BMT.
Literature search. You can search journals for BMT information from this page.
Support line and ask the expert. You have to register with the site before you can use these pages.

Blood and Marrow Transplant Resources

web site: http://www.bmtresources.org/

BMTresources.org offers practical information on going through a transplant. Although not aimed at pediatric patients, most of the information is applicable to children as well as adults.

Book: Over 140 Things you need to know about your autologous Bone Marrow or Stem Cell Transplant, by Mark Patton. This inexpensive book is chock-full of practical tips. The tips are short and to the point, and often humorous. Even if you have read everything else you could find on BMTs, I'm pretty sure you would find something new in this book. [Reviewed by PF, 1/2006]
Practical information (original content).
Links to resources.

International Bone Marrow and Cord Blood Search: Caitlin Raymond International Registry

University of Massachusetts Medical Center
web site: http://www.crir.org/
Phone: 800-726-2824

A comprehensive resource for patients and physicians conducting a search for unrelated bone marrow or cord blood donor. This organization helps find donors; the web site does not have a lot of technical information, although it has a good page of links to sites which do.

Parent's Guide to Choosing a Cord Blood Bank

http://www.parentsguidecordblood.com/

National Bone Marrow Transplant Link (NBMTLink)

web site: http://www.nbmtlink.org
phone: 1-800-LINK-BMT

"What to expect and how to get though it" is an account on the web site written by a patient. Although not ped-specific, this site is a very good source of information. Emotional as well as medical aspects are covered. You can order books, a Survivor's Guide and a resource book for BMTs, from the site. Resources for patients are also listed.

University of Minnesota

web site: http://www.med.umn.edu/bmt/

Complete questions and answers, from medical to psychosocial, in the FAQs. Excellent: most of these were gathered from the BMT talk listserve.

BMT FAQs

The International Bone Marrow Transplant Registry (IBMTR)

website: http://www.ibmtr.org/

This site is worth a visit, as it has some good original information on BMTs. Its purpose: "The International Bone Marrow Transplant Registry (IBMTR) and the Autologous Blood and Marrow Transplant Registry (ABMTR) are voluntary organizations of basic and clinical scientists collaborating in an effort to address important issues in blood and marrow transplantation. We are not a donor registry - we do not find donors for patients needing transplants. What we do is gather information on results of blood and marrow transplants. This information is used to guide clinical decisions and identify ways to improve transplant outcomes."

The JLS Foundation

website: http://www.jlsfoundation.org/

This informative site is written by the parents of a child who had a BMT. The links below take you directly to the BMT section and the quite excellent reference section.

Granny Barb and Art's Leukemia Links

web site: http://www.acor.org/leukemia/

Great links, excellent and organized well. This site has links to journal articles as well as other types of web resources.

Leukemia and Lymphoma Society

website: http://www.leukemia-lymphoma.org/

They once offered a booklet "I'm Having a Bone Marrow Transplant" A coloring book designed to help children up to 15 years of age express themselves throughout the stressful process of having a bone marrow transplant. You can view the booklet on screen or send for a mailed copy. (Can't find on their site 9/01)

Fujisawa Healthcare

web site: http://www.astellas.us/docs/meandmymarrow.pdf

This is a commercial site which has a book for pediatric patients undergoing a BMT. The book is FREE and available both as an online version and a pdf file. It's pretty good. Here is the text of an email this webmaster received announcing the book.

Me and My Marrow

Information listed by topic

Bone marrow registries

(Where to find them and how they work.)

Search for an unrelated donor - NMDP site
Donor Registries - on the BMF site
American Bone Marrow Donor Registry
Caitland Raymond International Registry
Bone Marrow Donors Worldwide

Cord Blood Transplants

Resources: Financial and Psychological

Help With Insurance Difficulties - on the BMT InfoNet site
Resource directory - on the BMF site. Contact information and/or web links to financial aid, bone marrow searches, insurance problems, fundraising, books on BMT.
Patient Aid Program - on the BMF site.
Fundraising - on the BMF site.
Office of Patient Advocacy - on the NMDP site.

Choosing a BMT Center

What questions should I ask the treatment team and hospital? - on the JLS Foundation site
A Directory of Transplant Centers - on the BMT InfoNet site

Links to Links Pages

The sites below are the links pages of external sites. Since these sites are dedicated to BMTs, they should be up-to-date on the latest BMT resources.

Bone Marrow Transplant Resource Netmarks - University of Oklahoma Health Sciences Center Blood and Marrow Transplant Program. Fantastic links to newsletters, a quick time movie, advances, books (I found though that several of the links did not work).