Our analysis suggests that hematologic oncologists need better clinical markers for when to initiate EOL care. In addition, current quality measures may be inappropriate for identifying overly aggressive care for patients with blood cancers. Further research is needed to develop effective interventions to improve EOL care for this patient population.

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While they account for one-fifth of new cancer cases, rare cancers are difficult to study. A higher than average degree of uncertainty should be accommodated for clinical as well as for population-based decision making. Rules of rational decision making in conditions of uncertainty should be rigorously followed and would need widely informative clinical trials. In principle, any piece of new evidence would need to be exploited in rare cancers. Methodologies to explicitly weigh and combine all the available evidence should be refined, and the Bayesian logic can be instrumental to this end. Likewise, Bayesian-design trials may help optimize the low number of patients liable to be enrolled in clinical studies on rare cancers, as well as adaptive trials in general, with their inherent potential of flexibility when properly applied. While clinical studies are the mainstay to test hypotheses, the potential of electronic patient records should be exploited to generate new hypotheses, to create external controls for future studies (when internal controls are unpractical), to study effectiveness of new treatments in real conditions. Framework study protocols in specific rare cancers to stepwisely test sets of new agents, as from the early post-phase I development stage, should be encouraged. Also the compassionate and the off-label settings should be exploited to generate new evidence, and flexible regulatory innovations such as adaptive licensing could convey new agents early to rare cancer patients, while generating evidence. Though validation of surrogate end points is problematic in rare cancers, the use of an updated notion of tumor response may be of great value in the single patient to optimize the use of therapies, all the more the new ones. Disease-based communities, involving clinicians and patients, should be regularly consulted by regulatory bodies when setting their policies on drug approval and reimbursement in specific rare cancers .

Objective: To evaluate the repeatability of a children's food frequency questionnaire (FFQ) by gender, ethnicity, and age group. Design: A 117-item FFQ asking about food intake patterns over the past 4 weeks was developed using food records from 428 children (204 boys and 224 girls) and the reproducibility on average 13 days apart was tested in 130 children (78 boys and 52 girls). Children were recruited using clustered probability sampling (n ¼ 103), and a convenience sample of 25 Maori children. Setting: Children aged 1-14 y from Auckland, Feilding and Shannon, New Zealand. Subjects: There were 71 Maori, 20 Pacific, and 39 Other children. Results: Spearman correlations between the two FFQs ranged from 0.50 for bread to 0.82 for fruit, with a median of 0.76 for spreads and nonmilk drinks, and Cronbach's coefficient a's ranged from 0.59 for bread to 0.92 for nonmilk drinks, with a median of 0.85 for mixed meat dishes. There were no significant differences between the two administrations, apart from reporting higher intakes of vegetables and snacks & sweets in the first FFQ. Correlation coefficients tended to be slightly higher in boys than in girls, and in Other ethnic groups compared to Maori and Pacific children. Correlations were slightly higher for the 1-4 y age group, intermediate in the 10-14 y age group, and lowest in the 5-9 y-old age group. Conclusions: Overall, the FFQ described here shows similar or better repeatability in New Zealand children of all major ethnic groups compared to other child or adolescent FFQs.