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Informed consent process for patient participation in rare disease registries linked to biorepositories. [electronic resource] by
- Rubinstein, Yaffa R
- Groft, Stephen C
- Chandros, Sara Hull
- Kaneshiro, Julie
- Karp, Barbara
- Lockhart, Nicole C
- Marshall, Patricia A
- Moxley, Richard T
- Pollen, Geraldine B
- Miller, Vanessa Rangel
- Schwartz, Jack
Producer: 20120529
In:
Contemporary clinical trials vol. 33
Availability: No items available.
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17.
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The need for worldwide policy and action plans for rare diseases. [electronic resource] by
- Forman, John
- Taruscio, Domenica
- Llera, Virginia A
- Barrera, Luis A
- Coté, Timothy R
- Edfjäll, Catarina
- Gavhed, Désirée
- Haffner, Marlene E
- Nishimura, Yukiko
- Posada, Manuel
- Tambuyzer, Erik
- Groft, Stephen C
- Henter, Jan-Inge
Producer: 20121105
In:
Acta paediatrica (Oslo, Norway : 1992) vol. 101
Availability: No items available.
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18.
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Clinical Trial Design for Alpha-1 Antitrypsin Deficiency: A Model for Rare Diseases. [electronic resource] by
- Wanner, Adam
- Groft, Stephen C
- Teagarden, J Russell
- Krischer, Jeffrey
- Davis, Barry R
- Coffey, Christopher S
- Hickam, David H
- Teckman, Jeffrey
- Nelson, David R
- McCaleb, Michael L
- Loomba, Rohit
- Strange, Charlie
- Sandhaus, Robert A
- Brantly, Mark
- Edelman, Jonathan M
- Farrugia, Albert
Publication details: Chronic obstructive pulmonary diseases (Miami, Fla.) Apr 2015
In:
Chronic obstructive pulmonary diseases (Miami, Fla.) vol. 2
Availability: No items available.
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19.
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Creating a global rare disease patient registry linked to a rare diseases biorepository database: Rare Disease-HUB (RD-HUB). [electronic resource] by
- Rubinstein, Yaffa R
- Groft, Stephen C
- Bartek, Ronald
- Brown, Kyle
- Christensen, Ronald A
- Collier, Elaine
- Farber, Amy
- Farmer, Jennifer
- Ferguson, John H
- Forrest, Christopher B
- Lockhart, Nicole C
- McCurdy, Kate R
- Moore, Helen
- Pollen, Geraldine B
- Richesson, Rachel
- Miller, Vanessa Rangel
- Hull, Sara
- Vaught, Jim
Producer: 20110307
In:
Contemporary clinical trials vol. 31
Availability: No items available.
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20.
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Expanding research to provide an evidence base for nutritional interventions for the management of inborn errors of metabolism. [electronic resource] by
- Camp, Kathryn M
- Lloyd-Puryear, Michele A
- Yao, Lynne
- Groft, Stephen C
- Parisi, Melissa A
- Mulberg, Andrew
- Gopal-Srivastava, Rashmi
- Cederbaum, Stephen
- Enns, Gregory M
- Ershow, Abby G
- Frazier, Dianne M
- Gohagan, John
- Harding, Cary
- Howell, R Rodney
- Regan, Karen
- Stacpoole, Peter W
- Venditti, Charles
- Vockley, Jerry
- Watson, Michael
- Coates, Paul M
Producer: 20140317
In:
Molecular genetics and metabolism vol. 109
Availability: No items available.
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