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CMWP & SAAWP: Patient identification requests and data requests

by
Severe Aplastic Anaemia Working Party (SAAWP)
Chronic Malignancies Working Party (CMWP)

Patient identification request – Impact of spleen irradiation in Myelofibrosis patients

On behalf of Chronic Malignancy Working Party, we are looking for patients with the following criteria:

  • Patients with primary or post ET/PV myelofibrosis
  • Age ≥ 18 years
  • Underwent allogeneic HSCT between 1998 and 2018
  • Underwent splenic irradiation before allogeneic HSCT

If your center has transplanted a patient who suits the above criteria, please send the patient’s unique identification code (UIC) to cmwpebmt@lumc.nl.

Patient identification request - Myelodysplastic Syndromes (MDS) and Paroxysmal Nocturnal Hemoglobinuria (PNH)

On behalf of the Severe Aplastic Anemia Working Party (SAAWP) and the Chronic Malignancies Working Party (CMWP), we are looking for centers that have treated patients with one of the two below clinical associations of PNH with MDS:

  1. MDS with PNH clones – with small PNH clones and no evidence of haemolysis (the subclinical PNH)
  2. MDS-PNH syndromes – with clinical and laboratory evidence of haemolysis (the clinical PNH)

If you have treated such a patient, please send the Unique Identification Code (UIC) to cmwpebmt@lumc.nl.

Data request - CML Data Quality Initiative

On July 2019, Chronic Malignancy Working Party has sent a study invitation of CML Data Quality Initiative. The purpose of the study is to improve the data quality of the EBMT registry, which will be beneficial for different future studies, for instance the following studies:

  1. Prognostic value of additional cytogenetic abnormalities at transplantation
  2. Impact of TKI discontinuation in CML patients who have previously restarted TKI following allogeneic HSCT
  3. Validation of new prognostic scores in CML
  4. Unrelated cord blood transplantation for patients with CML
  5. Comparison of haploidentical transplant to matched sibling donor in patients with CML blast crisis

If your center has transplanted adult CML patients between 2007 and 2018, but did not receive the data request, please contact cmwpebmt@lumc.nl.

Data request - Post-transplant cyclophosphamide as GvHD prophylaxis for allogeneic HSCT for MDS as compared to standard GvHD prophylaxis

On February 7th 2020, a study invitation was sent out to centers who have treated MDS patients with either post-transplant cyclophosphamide (post-CY) or Antithymocyte Globulin (ATG) as GvHD prophylaxis. The objective of the study is to compare the outcomes of patients who received post-transplant cyclophosphamide with those who had standard GvHD prophylaxis.

Inclusion criteria:
  • MDS or sAML before first allogeneic HSCT.
  • Adults (≥18 years) at first transplantation
  • First allogeneic HSCT between: 2012-2018.
  • Stem cell source: Bone marrow or peripheral blood from an unrelated donor.
  • GvHD prophylaxis: either post-cyclophosphamide (post-CY) or Antithymocyte Globulin (ATG).

If your center has treated eligible patients but did not receive the data request, please contact: cmwpebmt@lumc.nl.

Data request - Outcome of patients who received an allogeneic HSCT for MDS or (s)AML after a previous diagnosis of CLL or Lymphoma

On November 29th last year, a study invitation was sent out to centers who have treated MDS/(s)AML patients who had a previous diagnosis of CLL or lymphoma. The objective of the study is to identify related risk factors, recurrence of CLL/lymphoma and transplant related outcomes.

Inclusion criteria:
  • Diagnosis of CLL/lymphoma prior to the first allogeneic HSCT
  • First allogeneic HSCT indication diagnosis for MDS or AML
  • Adults (≥18 years)
  • First allogeneic HSCT between 2006 and 2017.

If your center has treated eligible patients but did not receive the data request, please contact: cmwpebmt@lumc.nl.