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Corporate Member Information Request
CIBMTR Corporate Members can request data using the online Corporate Member Information Request Form.

Use SHIFT+ENTER to open the menu (new window).
  
  
  
  
  
  
Brief Description
Region Category
  
  
Diseases
  
Age of the Recipient
  
Cell Source
  
Type of Donor
  
Outcomes
  
Other Outcomes
  
  
  
  
Type of data
  
Data Specifications
  
  
JINLAI FU862-579-5736jfu@celgene.com
I like to get data in Multiple Myeloma for analysis, hopefully In Nov.  It would you great if you can get back to me at your earliest convenience.
United StatesMultiple MyelomaAll AgesBone Marrow, Cord Blood, Peripheral BloodAutologous (patient's cells), Allogeneic - Related (patient's sibling or another family member's cells), Allogeneic - Unrelated (volunteer donor's cells)11/4/2015 10:03 AM
  
Niels Bossers+31 61 186 7951niels.bossers@quintiles.com
To whom it may concern,

Today (December 8th, 2015) I reached out to you concerning participating in our short survey (1-2 minutes) we sent out to gather more knowledge about your database “CIBMTR”.

In short, we are conducting a research to identify relevant organisations that collect real world data (RWD), and that would be interested to collaborate with a biotechnology company. By means of secondary research, we discovered that you are collecting data on multiple diseases in your database.

We would highly value your input in better understanding the type of data your organisation collects.

We would appreciate it if you could take 1-2 minutes to answer our questions related to your database.

1. Would you consider collaborating with a third party for research purposes?

2. Do you have data on patients with a hemoglobinopathy diagnosis?
a. If yes, do you capture data on patients with beta-thalassemia?
i. If yes, how many patients with beta-thalassemia does the database contain?
b. If yes, do you capture data on patients with beta-thalassemia major/ transfusion dependent beta-thalassemia?
i. If yes, how many patients with beta-thalassemia major/ transfusion dependent beta-thalassemia does the database contain?

3. Do you capture data on disease characteristics…
a. Severity of the disease? (e.g. transfusion dependent, beta-thalassemia major, intermedia and minor)
b. Lab parameters? (e.g. total haemoglobin levels, iron overload)
c. Genetic mutations causing beta-thalassemia?

4. Do you capture data on therapy…
a. Therapies and procedures? (e.g. iron chelation)
b. Gene therapy?
c. Blood transfusions?
d. Bone marrow transplantation?

5. Do you capture data on health related outcomes…
a. Mortality?
b. Therapy-related adverse events? (type, start & end date, grade)
c. Quality of life of patients?

6. Do you capture data on incidence of complications from living with beta-thalassemia? (e.g. liver dysfunction, cardiac dysfunction, endocrinopathies)

7. Do you capture health resource utilization?

The easiest way to participate is to directly respond to this e-mail, tick the boxes, and fill in the free text fields in the table above. We would be very grateful if you could complete and return the survey as soon as possible.

Please do not hesitate to contact us for any further questions or information.

Thank you in advance for your time and we look forward hearing from you.

Kind regards,

Niels Bossers


Europebeta-thalassemiaAll AgesBone Marrow, Peripheral BloodAutologous (patient's cells), Allogeneic - Related (patient's sibling or another family member's cells), Allogeneic - Unrelated (volunteer donor's cells)12/8/2015 8:58 AM
  
Niels Bosses+31 61 186 7951niels.bossers@quintiles.com
To whom it may concern,

Today (December 8th, 2015) I reached out to you concerning participating in our short survey (1-2 minutes) we sent out to gather more knowledge about your database “CIBMTR”.

In short, we are conducting a research to identify relevant organisations that collect real world data (RWD), and that would be interested to collaborate with a biotechnology company. By means of secondary research, we discovered that you are collecting data on multiple diseases in your database.

We would highly value your input in better understanding the type of data your organisation collects.

We would appreciate it if you could take 1-2 minutes to answer our questions related to your database.

1. Would you consider collaborating with a third party for research purposes?

2. Do you have data on patients with a hemoglobinopathy diagnosis?
a. If yes, do you capture data on patients with beta-thalassemia?
i. If yes, how many patients with beta-thalassemia does the database contain?
b. If yes, do you capture data on patients with beta-thalassemia major/ transfusion dependent beta-thalassemia?
i. If yes, how many patients with beta-thalassemia major/ transfusion dependent beta-thalassemia does the database contain?

3. Do you capture data on disease characteristics…
a. Severity of the disease? (e.g. transfusion dependent, beta-thalassemia major, intermedia and minor)
b. Lab parameters? (e.g. total haemoglobin levels, iron overload)
c. Genetic mutations causing beta-thalassemia?

4. Do you capture data on therapy…
a. Therapies and procedures? (e.g. iron chelation)
b. Gene therapy?
c. Blood transfusions?
d. Bone marrow transplantation?

5. Do you capture data on health related outcomes…
a. Mortality?
b. Therapy-related adverse events? (type, start & end date, grade)
c. Quality of life of patients?

6. Do you capture data on incidence of complications from living with beta-thalassemia? (e.g. liver dysfunction, cardiac dysfunction, endocrinopathies)

7. Do you capture health resource utilization?

The easiest way to participate is to directly respond to this e-mail, tick the boxes, and fill in the free text fields in the table above. We would be very grateful if you could complete and return the survey as soon as possible.

Please do not hesitate to contact us for any further questions or information.

Thank you in advance for your time and we look forward hearing from you.

Kind regards,

Niels Bossers

EuropeBeta thalassemiaAll AgesBone MarrowAutologous (patient's cells), Allogeneic - Related (patient's sibling or another family member's cells), Allogeneic - Unrelated (volunteer donor's cells)12/8/2015 9:20 AM
  
Ken Abreu609-528-5620ken.abreu@eusapharma.com
Seeking a listing of the latest year (2013) of available sales data, the total number of TOTAL BMTs performed in the US, ideally broken out by state and hospital within each state.

This is urgent, so please send me something as soon as possible.  Thank you.
United StatesAll DiseasesAll AgesBone MarrowAutologous (patient's cells), Allogeneic - Related (patient's sibling or another family member's cells), Allogeneic - Unrelated (volunteer donor's cells)3/1/2016 12:24 PM
  
Arzu Sonmez12345678arzussonmez@gmail.com
I need this data to add my report to compare the quantites  of Bone Marrow transpalntation in the US and the Europe and the other transplantation types
United States, Europe1/1/2015All DiseasesAll AgesBone Marrow, Peripheral Blood, Cord BloodAutologous (patient's cells), Allogeneic - Unrelated (volunteer donor's cells), Allogeneic - Related (patient's sibling or another family member's cells)6/7/2016 2:15 AM
  
Megan Smith(302)498-7476MSmith@Incyte.com
I am requesting access to data in support of developing a forecast model for Acute and Chronic GVHD patients for a potential new product in development for treating Acute and Chronic GVHD.

United StatesAll DiseasesAll AgesBone MarrowAllogeneic - Related (patient's sibling or another family member's cells), Allogeneic - Unrelated (volunteer donor's cells)6/29/2016 9:29 AM
  
Mike Rauscher415-455-7914mike.rauscher@bmrn.com
We are currently considering work on a clinical development program for sickle cell disease in both adult and pediatric populations (ages 5-35 years old), using a genetically modified cell product consisting of autologous human CD34+ HSPCs transduced using a Lentiviral vector.  Based on discussions with our Key Opinion Leaders, we hypothesize that the pediatric population will likely respond better to this treatment.  As we are designing our Proof of Concept Phase 1 trial, we are interested in identifying an adult population that could have improved outcomes with an autologous transplant (versus allogenic transplant) most similar to the pediatric population.  As such, we were hoping to get access to natural history data from the IBMTR database on autologous transplant SCD patients, with a particular focus on any possible prognostic indicators (e.e., age, disease burden/severity, transfusion dependence vs transfusion independence, types of complications, use of hydoxyurea, etc) in terms of SCD outcomes in the adult population (ages 18-35 years old).  SCD outcomes to include, but not limited to:
- Successful engraftment
- % chimerism
- Overall Survival
- Incidence of trans-plant related mortality and morbidity
- Frequency of vaso-occlusive crises, acute chest syndrome and ischemic events (with and without hospitalization) pre and post
- RBC transfusion requirements pre and post
- Pain meds use
United States, EuropeSickle Cell Disease & beta-thalassemia 5-35 years oldBone Marrow, Peripheral BloodAutologous (patient's cells), Allogeneic - Related (patient's sibling or another family member's cells), Allogeneic - Unrelated (volunteer donor's cells)11/29/2016 7:06 PM
  
Mohammad H Forouzanfar4255272565mforouzanfar@seagen.com
We would like to know the survival and mortality rate of BMT in AML (AML&MDS) patients. Time periods for survival may be survival at 3 months, 6 months and 1 year by fine age groups (10 years groups) and subgroups including:
Type of conditioning, patient’s situation at the time of BMT with regard to first time/remission/recurrence/primary refractory, type of AML (primary vs secondary and MDS). Patients with first occurrence of disease (in first CR or CR1) and conditioning intensity.
Also relative survival or hazard ratio by prognostic patient characteristics such as remission/refractory and primary/secondary AML, and conditioning intensity.
Also if possible, the rate of hepatotoxicity and more specifically, incidence of hyper bilirubinemia and Veno-Occlusive Disease of the Liver (Hepatic sinusoidal obstruction syndrome (SOS) by prognostic factors above.
Thanks
United StatesAcute Myeloid Leukemia, Myelodysplastic Leukemia, Acute Lymphoblastic LeukemiaAll AgesBone Marrow, Peripheral Blood, Cord BloodAutologous (patient's cells), Allogeneic - Related (patient's sibling or another family member's cells), Allogeneic - Unrelated (volunteer donor's cells)1/10/2017 4:12 PM
  
Timothy Chanoux617-768-6465tim.chanoux@sanofi.com
I am looking to understand the frequency of which the Basal Cell Skin Malignancy, and the Squamous Cell Skin Malignancy boxes are checked on the pot-TED form.  In particular, what percent of post-TED forms come back with those boxes checked.
United StatesAll DiseasesAll AgesBone MarrowAutologous (patient's cells)3/15/2017 7:52 AM
  
Robert Igarashi510-407-5383robert.igarashi@cytosen.com
We are a startup developing NK cell therapeutics for hematological oncology purposes.
United StatesAcute Myeloid Leukemia, Chronic Myeloid LeukemiaAll AgesBone MarrowAllogeneic - Related (patient's sibling or another family member's cells)Overall SurvivalProgression free survival, relapse rate, Chronic GVHD, Acute GVHD, Treatment-related Mortality, Relapse, Disease-free Survival, Neutrophil recovery3/20/2017 2:12 PM
  
Sarah Goring778-994-5115sarah.goring@iconplc.com
We are interested in gaining full access to de-identified data from CIBMTR. I have several other questions and would be interested in setting up a meeting to discuss.
United States, EuropeAll Diseases18+Bone Marrow, Cord Blood, Peripheral BloodAllogeneic - Related (patient's sibling or another family member's cells), Allogeneic - Unrelated (volunteer donor's cells)Overall SurvivalResponse at day 28, Acute GVHD3/31/2017 12:41 PM
  
Graham Osborn4042912972graham.osborn@sppirx.com
We would like to query the registry for retrospective data on GI side effects/ mucositis post-transplant for Evomela vs other versions of melphalan.
United StatesMultiple MyelomaAll AgesBone MarrowAutologous (patient's cells)mucositis, GI side effects5/17/2017 9:27 AM
  
Steven price 908-642-1387Sprice@actiniumpharma.com
Do you have data on the patient number or percent of transplants in aml that are over 56 years of age?
United StatesAcute Myeloid Leukemia55 yo and olderBone MarrowAllogeneic - Related (patient's sibling or another family member's cells)7/13/2017 5:04 PM
  
1http://www.emailmeform.com/builder/form/lXbU6rMeHFZ21607WbR0https://eddrugs2017.tumblr.com
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United StatesAll DiseasesAll AgesBone MarrowAutologous (patient's cells)7/27/2017 11:11 AM
  
Dong Wei4155356644weidong3@hotmail.com
Treos Bio is a start-up biotech company, and one of our research directions is association of risks of cancer (including the specific disease and treatments such as transplant) and baseline patient data (including demographics and HLA data).  We are interested in obtaining access to the following Baseline recipient data:

• Diagnosis – disease subclassification or histology, stage at transplant, pre-HCT disease treatment
• Demographic –gender, age, race/ethnicity
• Transplant procedure – HLA typing
• Clinical – coexisting diseases
United States, other regions OKAll DiseasesAll AgesBone Marrow, Peripheral Blood, Cord BloodAutologous (patient's cells), Allogeneic - Related (patient's sibling or another family member's cells), Allogeneic - Unrelated (volunteer donor's cells)8/10/2017 1:11 PM
  
Willis Navarro8056234246wnavarro@atarabio.com
We hope to understand the incidence and overall survival outcomes for patients who develop PTLD after alloHCT
United States, All CIBMTR regionsPost-transplant lymphoproliferative disease post-alloHCTAll AgesBone Marrow, Cord Blood, Peripheral BloodAllogeneic - Related (patient's sibling or another family member's cells), Allogeneic - Unrelated (volunteer donor's cells)Overall SurvivalTreatment-related Mortality, Relapse, Disease-free Survival9/19/2017 9:30 AM
  
Shengnan Xie3024986173sxie@incyte.com
Would like to request a breakdown list of the incidence and overall survival of aGvHD and cGvHD at each state in the US.
United StatesAll DiseasesAll AgesBone Marrow, Peripheral Blood, Cord BloodAllogeneic - Related (patient's sibling or another family member's cells), Allogeneic - Unrelated (volunteer donor's cells)Overall SurvivalTreatment-related Mortality, Relapse, Disease-free Survival, Acute GVHD, Chronic GVHD9/28/2017 1:50 PM
  
Winifred Werther, PhD650.244.3710 wwerther@amgen.com
Describe patient and clinical characteristics of the MM patients who receive ASCT in the US from 2012-2016. Characterize induction treatment regimens in MM patients undergoing ASCT by year (2012-2016). Estimate disease related outcomes by year and by induction regimens during follow-up including time to disease progression and overall survival

United StatesMultiple MyelomaAll AgesBone MarrowAutologous (patient's cells)Overall Survivalprogression free survival10/12/2017 12:47 PM
  
Nalini Purkayastha+16093024751nalini_purkayastha@bms.com
Looking for a potential data purchase to understand GVHD patient dynamics to understand company performance.
United StatesAll DiseasesAll AgesBone MarrowAutologous (patient's cells), Allogeneic - Related (patient's sibling or another family member's cells), Allogeneic - Unrelated (volunteer donor's cells)Overall SurvivalAcute GVHD, Chronic GVHD, Treatment-related Mortality, Relapse, Disease-free Survival, Neutrophil recovery12/12/2017 2:17 PM
  
Robert Igarashi510-407-5383robert.igarashi@cytosen.com
Development of NK cell therapies
United StatesAll Diseases, Myelodysplastic Leukemia, Acute Myeloid LeukemiaAll AgesBone MarrowAllogeneic - Related (patient's sibling or another family member's cells), Allogeneic - Unrelated (volunteer donor's cells)Overall SurvivalCMV eactivation, Acute GVHD, Chronic GVHD, Treatment-related Mortality, Relapse, Disease-free Survival, Neutrophil recovery1/10/2018 5:15 PM
  
Andrew Harrell972-415-5996a.harrell@lek.com
Thank you for your help.  We are conducting a study and would like to understand the volume of allogeneic transplants done, by facility in the U.S., in recent years.  We would be interested in understand the source of the tissue (donor type) and also the tissue type - all by hospital / center, please.
United StatesAll DiseasesAll AgesBone Marrow, Peripheral Blood, Cord BloodAllogeneic - Related (patient's sibling or another family member's cells), Allogeneic - Unrelated (volunteer donor's cells)Overall SurvivalAcute GVHD, Chronic GVHD, Treatment-related Mortality, Relapse, Disease-free Survival, Neutrophil recovery1/31/2018 12:43 PM
  
Kelly Cobo404-548-3526kelly.cobo@anthem.com
North American Survival Data for 2015 & 2016 separated by Autologous and Allogeneic related, and Allogeneic unrelated for both adult and pediatric.
United StatesAll DiseasesAll Ages, Separated by pediatric and adultBone Marrow, Cord Blood, Peripheral BloodAutologous (patient's cells), Allogeneic - Related (patient's sibling or another family member's cells), Allogeneic - Unrelated (volunteer donor's cells)2/7/2018 12:50 PM
  
Kelly Cobo4045483526kelly.cobo@anthem.com
Report of North American US Data for Autologous, Allogeneic Related and Allogeneic Unrelated for 2015 & 2016 - separated by adult and pediatric.
United StatesAll DiseasesAll AgesBone Marrow, Cord Blood, Peripheral BloodAutologous (patient's cells), Allogeneic - Related (patient's sibling or another family member's cells), Allogeneic - Unrelated (volunteer donor's cells)2/7/2018 1:09 PM
  
Sherry Fishernaslfisher@mcw.edu
I am testing this page as we've received reports of external users receiving an error when attempting to submit a request this way.
United StatesAll DiseasesAll AgesBone MarrowAutologous (patient's cells)4/18/2018 11:29 AM
  
Test - Joshua Gier9206272346jjgier@live.com
This is a test description
United States1/1/2010All DiseasesAll AgesBone MarrowAutologous (patient's cells)4/19/2018 12:58 PM
  
James Neels609-454-7945jneels1@its.jnj.com
Looking to understand the treatment characteristics for multiple myeloma patients who receive a stem cell transplant.
We would like to understand the pricing implications of various outcomes requested, disease states and history.
United StatesMultiple MyelomaAll AgesBone Marrow, Peripheral Blood, Cord BloodAutologous (patient's cells), Allogeneic - Related (patient's sibling or another family member's cells), Allogeneic - Unrelated (volunteer donor's cells)Overall SurvivalAcute GVHD, Chronic GVHD, Treatment-related Mortality, Relapse, Disease-free Survival, Neutrophil recovery, Interested in effectiveness of certain therapies and depth of response5/2/2018 9:29 AM
  
Nalini Purkayastha+16093024751nalini_purkayastha@bms.com
The purpose of this request is to accurately forecast the potential product manufacturing requirement should we get the indication we are applying for with the FDA.
United StatesAll Diseases, Acute Myeloid Leukemia, Acute Lymphoblastic Leukemia, Myelodysplastic Leukemia, Chronic Myeloid Leukemia, Non-Hodgkin Lymphoma, Multiple MyelomaAll AgesBone Marrow, Cord Blood, Peripheral BloodAutologous (patient's cells), Allogeneic - Related (patient's sibling or another family member's cells), Allogeneic - Unrelated (volunteer donor's cells)Acute GVHD, Treatment-related Mortality, Relapse, Disease-free Survival, Chronic GVHD, Neutrophil recovery5/7/2018 12:26 PM
  
Andrew Dietz6127191200adietz@bluebirdbio.com
Beta-thalassemia allo-HSCT outcomes
United StatesBeta-ThalassemiaAll AgesBone Marrow, Peripheral Blood, Cord BloodAllogeneic - Related (patient's sibling or another family member's cells), Allogeneic - Unrelated (volunteer donor's cells)Overall SurvivalAcute GVHD, Chronic GVHD, Neutrophil recovery, Treatment-related Mortality, Relapse, Disease-free Survival, If possible, rejection free, chronic GVHD free survival5/7/2018 2:54 PM
  
Stephen Carpenter917-703-8206stephen.carpenter@regeneron.com
We are planning an early phase trial in recipients of both matched unrelated donor, and HLA-mismatched (but not haploidentical) stem cell transplant recipients, and are interested in matching our cases to appropriately to patients in the CIBMTR database, and looking at engraftment rates, overall survival, infection, timing and rates of acute GVHD (Grades2-4 and 3-4), timing and rates of chronic GVHD, disease-free survival, relapse rate, immunosuppression-free survival.  We would like to match controls from the database to patients in our trial based on age, diagnosis, immunosuppression, and type of graft.  We welcome a discussion with the CIBMTR and your statistics groups to assist us with the best trial strategy / matching strategy.
United StatesAll Diseases12 and olderBone Marrow, Peripheral BloodAllogeneic - Unrelated (volunteer donor's cells)Overall Survival5/11/2018 2:52 PM
  
Sean E. Connolly609-302-3315sean.connolly@bms.com
Request for patient level dataset used in Leslie Kean's protocol CIBMTR SC16-04c.
Data will be combined into a single SDTM data set and a single ADAM data set for Study GVH1201. 
Combined Datasets will be used in FDA submission
United StatesAll DiseasesAll AgesBone MarrowAllogeneic - Unrelated (volunteer donor's cells)as described in CIBMTR SC16-04c6/7/2018 2:00 PM
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