Canadian resource guides for individuals and families affected by primary immunodeficiency
Why this work is in the frame
A frame that forgets how it found something cannot be audited. These are the routes that admitted this work.
Bibliographic record
Abstract
A diagnosis of immunodeficiency can be challenging for families as they navigate the emotional impact of this diagnosis, as well as the potential financial burden of treatment. For rare diseases such as primary immunodeficiency (PI), patients are often required to take a proactive role in managing their own care and may be engaged with health care providers who have minimal experience with PI disease. These providers may also have limited access to information on the resources available for this population. A review of the information available showed that a paucity of information existed for these families who were looking for appropriate resources related to their diagnosis. The PI Social Work Network was established in 2011 by Immunodeficiency Canada to develop a network of social workers across Canada who work with patients diagnosed with PI. This network has had a focus on support programs, education, and research. Resource guides were created by the network to support families by providing information on both provincial as well as national resources available. While these lists are not exhaustive, there is an attempt to keep them as up to date as possible. If additional psychosocial support would be beneficial or a family requires support accessing resources, they should be directed to their local hospital social worker, or they may contact Wendy Shama, MSW, RSW, at Immunodeficiency Canada. Statement of novelty: National and provincial resources guides have been created for families and individuals affected by primary immunodeficiency.
Fetched live from OpenAlex and de-inverted. Abstracts are not stored in this database: the inverted indexes are 8.6 GB of the frame’s 9.3 GB of text, and the host has 13 GB free.
Full frame distilled prediction
Teacher imitationNot calibrated prevalence, not ground truth. Human validation pending. Learned from the 10,348 direct Codex labels and 10,348 direct Gemma labels. Candidate is the union of thresholded teacher heads; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels or direct frontier model labels.
Codex and Gemma teacher scores by category
| Category | Codex | Gemma |
|---|---|---|
| Metaresearch | 0.000 | 0.000 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.000 | 0.000 |
| Bibliometrics | 0.000 | 0.000 |
| Science and technology studies | 0.000 | 0.000 |
| Scholarly communication | 0.000 | 0.000 |
| Open science | 0.000 | 0.000 |
| Research integrity | 0.000 | 0.000 |
| Insufficient payload (model declined to judge) | 0.000 | 0.000 |
Machine scores (provisional)
The two teacher heads of the student model, read on this work. A score orders the frame for review; it never asserts a category, and the validation status ships verbatim with every row.
Baseline scores from an immature model (maturity gate not passed, 7 training rounds). Scores rank; they never assert a category.
score_only:v0-immature-baseline · verbatim from the scoring run: score_only means the number may rank works, and no category label ships from it