The purpose of the study is “to assess the prevalence and severity of pain, common pain sites, and the impact of pain on functioning and well-being in people with thalassemia who receive regular blood transfusions and in people with thalassemia who do not receive regular blood transfusions.”  (In other words, they need both thalassemia patients who DO get blood and people who DON’T get blood.) 

Some people might look at the study title and think, “I don’t really have a lot of pain, so they don’t need me.”  That’s not the case – a goal of the study is to find out what percent of people with thalassemia do have pain.  Any patient with thalassemia is encouraged to consider being part of the study, whether s/he experiences no, little or a lot of pain.  And the study is looking to recruit patients from a range of diagnoses of thalassemia (e.g., beta thalassemia major, beta thalassemia intermedia, hemoglobin H disease, homozygous alpha thalassemia, etc.)  To see the full information about this study, click here.  

One thing that should make this study attractive: it doesn’t demand a great deal of time from participants.  Essentially, each participant will be asked to fill out a couple of questionnaires that provide basic information about the patient and which will ask questions related to any pains the patient experiences.  The patient will then be called on the phone after 3 months, 6 months and 9 months have passed and asked some of these same questions again, to see if anything has changed during that period.  That’s all that’s involved. 

There is also a substudy that focuses on regularly transfused patients, and some participants in the larger study may be asked if they would like to participate in this substudy. 

Susan Winner is a thalassemia patient who is participating in the pain study. "Taking part in this study has been rather easy," she says.  "Just a little time is needed to answer some important questions about your pain levels on a daily basis.  Since the issue of pain is a growing concern among many thalassemia patients, I feel that it was very important to participate.     

“I am hoping that this study will give the insight needed to determine the causes of back and joint pains that occur so often."    

“This study really grew out of listening to patients,” says Dru Foote, PNP, Children’s Hospital Oakland, who is the Principal Investigator on the study.  “A number of thalassemia nurse practitioners were discussing the fact that we frequently hear patients mentioning pain, especially as they grow older.  We realized this was an area that hasn’t really been studied; pain hasn’t traditionally been thought of as a symptom of thalassemia. 

“This study is a first step in discovering how big is the problem of pain in the thalassemia community, in discovering what percentage of the population experiences pain.  And the substudy will help us learn more about whether there is a correlation between transfusion status and pain.    

“Once we have information in these areas, we will better know what steps we need to take to address pain in our patients.”  

The Assessment of Pain in People with Thalassemia study is seeking to recruit a total of 300 individuals.  If you would like to participate in this valuable study, please contact Lisa Virzi, RN, MS, MBA, at 617-923-7747 x 258 or This e-mail address is being protected from spambots. You need JavaScript enabled to view it , or Racquel Allen, MPH at 617-923-7747 x269 or This e-mail address is being protected from spambots. You need JavaScript enabled to view it .